Découvrir les récits sur la façon dont les troubles de la coagulation ont impacté certaines personnes et leurs proches
Le contenu publié sur ce site a été soumis par des tiers et n’est ni représentatif ou approuvé par la Fédération mondiale de l’hémophilie.
Sometimes the stories of life seem like the stories of books, my story was like that, it can also be called the story of getting life back.
It was mid-year 2014 when I first needed surgery for gallbladder stone removal through laparoscopy in Chattogram, Bangladesh in a private Hospital. The operation was successful but the internal bleeding couldn’t stop, my physicians all are surprised because they couldn’t find any cause for the internal bleeding. After 15 days from Chattogram to Dhaka I need to shift to better treatment. During those 15 days, I was also in a hospital bed losing lots of blood. Meanwhile, my physician in Chattogram did another surgery called laparotomy to find out the root cause of bleeding. Unfortunately they can’t stop my internal bleeding.
In Dhaka another private hospital physician again opened my abdomen and place a surgical foam and take under observation. After a few days my physician observed that the bleeding not stopped. In that time he sent my blood sample in India for Factor level check purpose. In the meantime I need to spend 45 days in an expensive hospital in Dhaka around 45 days. My family needs to sale our some properties and assets for my treatment purpose. At last, the report came from India that I am Haemophilia B positive patient.
Those two months turned my life into a big U-turn along with my family.
Due to back to back-to-back surgeries, I need to again lay in an operation bed for repair Hernia surgery in Chennai, India year 2018. For those operations, I needed to take Factor IX which was very expensive. I lost more than four years but learned what Haemophilia is how to manage it and finally I learn the truth about my life that I am special one who was chosen by Allah from the all human being Allah who will special take care of me. I am not afraid I am not alone.
“Life is not beautiful, it’s so colourful “
I found this page while searching about my hemophilia diagnosis.
My Name is Cindy Nogueras, 28, from Puerto Rico. Back in July 2023, while I was unknowing fighting for my life was diagnosed with Hemophilia factor XII also known as HAF deficiency, Hageman factor deficiency, Hageman trait. Factor XII deficiency is a rare genetic blood disorder that causes prolonged clotting (coagulation) of blood in a test tube without the presence of prolonged clinical bleeding tendencies.
It is caused by a deficiency of factor XII (Hageman factor), a plasma protein (glycoprotein).
The condition caused bleeding in my knees which has left me temporarily in a wheelchair, and stiff leg which can’t stretch due to the loss of the meniscus and cartilage.
This condition is also accompanied by agammaglobulinemia, which means I don’t have the protein which creates the immune system, and I will be having infusion for the rest of my life to treat it.
Although I Was mostly in and out of the hospital growing up, no one ever knew why, once I had a bad fall no one couldn’t tell me why my meniscus and cartilage were getting wear out. Until May 2023, I ended up in wheelchair with a bad pain and bad cramp from leg to knee, my rheumatologist sent me to emergency in suspicion of a sepsis on my knee.
I stayed in the hospital for about 19 days, 4 days in emergency room and 15 days up in a room, with many doctors and specialists visiting, from cardiologists, rheumatologists, orthopedics, hematologists, internists, immunologists and there they found my hemoglobin was in 4 and dropping, a bacteria in my blood, the hemophilia and the agammaglobulinemia.
Although I know neither have a cure, and will always be a part of me, I haven’t stopped doing what I love, I go to events of cosplay, work related events, and my photography hobby. Even if I can’t work now at what I got a degree on, I’m happy to be alive and continuing what I’m doing, with my family supporting me through this journey, mentally and physically.
health insurance doesn’t cover everything but we do everything we can to deal with it.
Yo bien agradecida con la lic.laura Paez y la doc.laura villareal de la clínica de hemofilia del hospital universitario.ya once años que mi hijo es atendido ahí ,es una excelente atención con su gran equipo multidiciplinario,nos han enseñado tantas cosas ,de como debemos llevar una buena profilaxis y poder nosotras mismas infundir a nuestros hijos.gracias a su atención podemos llevar una vida normal .
My name is Eliza VanZweden, and I am writing to share my journey as a woman living with Glanzmann’s Thrombasthenia. GT is a rare bleeding disorder caused by a platelet defect in which platelets do not aggregate to stop bleeding.
I was diagnosed shortly after birth in 1999, due to symptoms of birth trauma. My path to diagnosis was certainly more painless than others, as my older brother had already been diagnosed with GT. Growing up, I struggled with many nosebleeds which would often bleed for days. For these and other serious bleeds like throat and GI bleeds, I received many on-demand platelet transfusions in my youth. There are very limited treatment options for GT patients, who are often left to resort to platelet transfusions, Factor VII bypassing agents, or tranexamic acid. There are no prophylactic options available for GT patients currently.
As I grew, I learned about the risks associated with platelet transfusions – they should only be used to stop bleeding in emergency situations due to the risks of developing antibodies. This left me anxious – my only treatment option could become ineffective at any time and fail me in an emergency situation when I need it the most. The trust that all my bleeds will be solved with a platelet transfusion was replaced with worry surrounding every bleed and debating every time I bleed how much is “too much” before I go in for treatment – does a nosebleed need to last 8 hours before getting a transfusion? Or should it be reserved for one that is bleeding for 4 days?
As I transitioned to adulthood, I have recently faced my most challenging symptoms. My health is no longer only focused on my bleeding disorder, but also encompasses my bone, reproductive, and mental health due to long time suppression of periods using hormonal therapies. More recently, I suffered a thrombotic event which left me with a portion of permanent blindness in one eye. This experience, as well as my struggles to control my nosebleeds and menstrual bleeding has left me hypervigilant of how being a GT patient affects every aspect of my health.
Although I still struggle with knowing when to get treatment for severe bleeds and don’t have access to prophylaxis treatment, preventative care has still been key in managing my bleeding disorder. This involves minimizing my risks in every activity or environment, and being prepared for every situation.
The bleeding disorders community I have come to know through the World Hemophilia Foundation and the National Bleeding Disorders Foundation (NBDF) in the United States has proved to be an invaluable support and resource. I have met others who have the same bleeding disorder as I have and am inspired to be an advocate for this community <3
I have a child, named Aaron, who was diagnosed with Hemophilia A Severe, when he turned 1 year old in year 2010. He had an episode of intracranial hemorrhage at the age of 2, which almost cost his lives and along the way, had many joint bleeds episodes. At that moment in time, all the hospitals in Sabah, only provided On-Demand therapy.
I was fortunate to be able to communicate and gain knowledge from all the treaters from hospitals and universities, especially the hematologists. In early 2014, I had collaborated with a hematologist from the University Malaysia Sabah to organize a workshop for hemophilia patients in Sabah.
In end of 2014, I was approached by a strong advocate of hemophilia who is also the former President of Hemophilia Society of Malaysia and former Vice President of World Federation of Hemophilia. He encouraged and guide me the way to initiate and set up a Hemophilia Society within my region.
So, in the year 2015, I was involved in advocacy in the form of Hemophilia Society of Malaysia Sabah Chapter because I believe in the power of action to create positive change. Advocacy allows me to use my voice and influence to address issues that matter deeply to me, such as supporting individuals with hemophilia.
By actively participating in advocacy efforts, I can contribute to raise awareness, influencing policies, and fostering a more inclusive and supportive society for those affected by this condition.
Through advocacy in action, I can make a tangible difference in the lives of individuals with hemophilia, helping to ensure they receive the care, understanding, and opportunities they deserve.
I managed to establish a strong network of stakeholders ie.Ministry of Health(Sabah), hospitals(throughout Sabah and Kuala Lumpur), to ensure that the society stays updated with the latest advancements in hemophilia treatment and care. Through strong networking, it facilitates collaboration among the healthcare providers, patients, caregivers, and policy makers. It also increases the society’s ability to access resources.
As a 2024 SSMF Scholarship recipient, I will make the Hemophilia Society stands as a beacon of strength and hope, transforming lives and reshaping the narrative surrounding this challenging condition.
Hola mi nombre es Patricia naranjo y soy mamá de Diego Blankevoort de 7 años quien tiene Hemofilia A severa soy portadora de hemofilia mi padre tenía hemofilia y cuando nació mi hijo nunca imaginé que el podría tener y así fue desde un año que Diego usa la profilaxis el se inyecta hoy en día 1000 de liofilizado y nos a echo la vida más fácil y para mí niño la vida normal estoy muy feliz por su tratamiento ya que si el Diego se pone mal nunca debe de faltar a su tratamiento siempre al pie de la letra vamos hoy en día yo aprendí a inyectarlo gracias al centro de hemofilia del Hospital Roberto del Río y asus profesionales en especial ala doctora Verónica Soto la mejor doctora que le tocó a mi hijo y así vamos viviendo día a día su enfermedad se puede vivir en armonía y tranquilidad.
I am a mom of four beautiful children, with one having moderate Hemophilia A (however, he bleeds as a severe). He is my second youngest and most defiantly the most wild out of my bunch. From 7.5 years ago, when we found out Elias has hemophilia shortly after birth, life has has it challenges but most importantly its brought us into an amazing community that I cannot be grateful to be apart of.
When Elias was first born, we knew pretty soon after birth, that something was not right. He bled, and bled, and bled for days. We later were finally transferred to Vanderbilt Children’s Hospital where we found that he had Hemophilia A. What a day that really was. From being exhausted from having a new baby, to finding out that he has a serious condition, it really took a toll on me, as his mom. From that day though, I knew that I had to become Elias’ expert of his body and his condition because I was not only a mom now, but his advocate as well.
Early on, things were okay and we treated as needed. He started walking, and we had to have a few infusions from him falling and bruising that just would not stop growing. He started talking, and we had multiple infusions from mouth bleeds from him biting his tongue. When he was 2, we spent Christmas Eve in the hospital from an ankle bleed that we assume he got from walking on gravel (but who really knows). A few months later he got another joint bleed but this time in his elbow that we concluded had to of been spontaneous. At this point, I knew I had to stand up for him and decided that we needed to start on prophy because I could not deal with my son being in so many pain and treating afterward. After much fighting with insurance, he was finally approved to start emicizumab.
Emicizumab has absolutely been life changing for us. While I had never limited Elias from doing fun boy things, like riding his bike, jumping on a trampoline, doing backflips off the couch, riding a dirt bike, you know all the “fun” things that kids like to do, emicizumab sorta gave a peace of mind as well. Literally 3 months after his elbow bleed, he ended up breaking his other arm while in a bouncy house, ONLY MY CHILD RIGHT? LOL. We infused as a precaution but I really believe that because he has emicizumab, his injury was not worse.
Elias is now 7.5 and is NOT a poster child of Hemophilia. I let him do all the fun things that he wants to do (for the most part anyways). I fully believe that if I do not let him learn his own limitations now and let him “live in a bubble” then things will only get worst as he gets older. He plays baseball and is aggressive in his position and I think its great! He does not let Hemophilia define his life and I don’t either. Our life may be a little different from others, we may have to do things a little differently, but as a mom of hemo hero, my mind now thinks differently too.
We have started bringing awareness to our local community as well as bringing it all the way to Washington D.C. Nobody knows if they simple just don’t know. It is our job to bring attention to the matter and bring the awareness because I too, was one of those who had no idea that the word “hemophilia” meant. I love this journey that we as a family are now embarking. Elias is learning to advocate for himself, his siblings are also aware and are able to bring awareness to who around them too. Hemophilia not only affects the one who has it, but the entire family as a whole. We must support, advocate, and deal with it together to come out stronger and better than ever. Hemophilia will never stop Elias, it just may try to slow him down, but we are there to support and push him, because it will never win; we will not let it!
Dear All,
My name is Phyo Khant Kyaw, and I am writing to share my journey as a severe Hemophiliac with Factor-IX deficiency from Myanmar.
In 1998, I was faced with the harsh reality of my condition when a simple injury to my gum led to a diagnosis that changed my life forever. At that time, diagnosing Factor deficiency in Myanmar was a challenge, and I had been on a journey over thousand blood transfusions.
Despite the countless transfusions, my knowledge of hemophilia remained limited. When I became a member of the Myanmar Hemophilia Patient Association (MHPA), I was able to connect with others facing similar challenges, and together, we shared knowledge, experiences, and support that empowered me to navigate my condition with greater confidence and understanding.
One of the most harrowing moments of my journey was experiencing an intracranial hemorrhage during my childhood. I was engulfed by fear, unable to speak, and unable to see the light . However, care and treatment provided by Pf. Aye Aye Khaing, I got recovery within two weeks.
Until 2016, the absence of Factor-IX treatment left, resulting in deformities in both knees and my left elbow. However, in 2017, with the introduction of Factor treatment, a new chapter of hope began.
I am immensely grateful to the World Federation of Hemophilia (WFH), whose saving my life and the lives of countless others affected by this condition. Through their initiatives and advocacy, individuals like myself have been given a chance at life, hope, and a brighter future.
In closing, I extend my deepest gratitude to Pf. Aye Aye Khaing, the Myanmar Hemophilia Patient Association (MHPA), and the World Federation of Hemophilia (WFH).
With heartfelt appreciation,
Phyo Khant Kyaw
Terapeuta Hemato-Onco formada para peques con Hemofilia sin conocer que la vida me preparaba para atender a mi propia familia. Oaxaca-México
This is my Journey of living with Haemophilia.
When i was 11-year-old, there was great debate regarding my circumcision among the family. Elder members like my grandmother and uncles, remembering the death of my uncle due to non-stop bleeding, resulting from the circumcision as per the Muslim tradition in Sudan. My father, one of the admirers of Dr. Faroog Sidiqu, the reputed hematologist at the Khartoum Hospital, suggested that it is the doctor who would decide on it. My father was right. He could remember, the son was laying on the bed at that regional hospital, between life and death, bleeding for the third consecutive day. Doctors were puzzled and almost exhausted all options to stop this nasty bleeding from the nose. He took the journey from, after losing hopes, from Berber to Khartoum, not quite sure that his beloved son would make it. Dr. Faroog was in charge of the case. The child was admitted in the hospital, blood transfusions were made one bottle after another, and many tests were done.
– your son is confirmed to have a bleeding disorder, do you have any similar issues in the family? Asked Dr. faroog
-Yes, two of his uncles, mother’s brothers died at age of 9 and 13. Father replied.
-He is lucky to be born in an era that witnessed many improvements in the medical care of this clotting problem.
I was admitted at Khartoum Hospital for almost a week with the plasma infusion undertaken every 12 hours. the doctor assured there is a new medicine which would be a game changer in the lives of poor hemophiliacs. that was almost in 1971 when i was diagnosed and had my first treatment. My father and I came back to our home in the town of Berber, 360 Km north of the capital overwhelmed by the cheers of the relatives who presumed a miracle has been taking place and overloaded with many advice of the doctor on how to handle the case of boy. From that day i became a regular visitor to blood bank of Kh Hospital.
I went to the toilet, secretly wished to evaluate the efficiency of this medicine by myself. i was admitted because there was blood in my urine that lasted for couple of days. I came our rushing to my father, ” Yes, it is working dad, oh my God”.
What is working? asked my dad?
“The medicine” .i replied back………. “My urine turned to light yellow instead of red.”
it was a simple verification of the worthiness of the injected medicine. Color is changing from red to light yellow. i was stunned. my doubts turned into firm belief.
1976, i completed 10 years, with many self-awareness about the line that has been drawn. i sensed the attention of many eyes focusing on anything that i was doing. Playing football with my peers was a big taboo. I loved football and exhibited remarkable skills in playing. yet my friend would be very reluctant to let me play with them. They are afraid of the subsequences. At school the story was a bit different. The teachers were well informed about my case and warned that any physical punishment my lead to serious subsequences. I was very good at all subjects and topped the class. Not giving any teacher any reason to push me. Lashing the boys with whips was a common practice and the teachers were authorized to do it. when there a common punishment, the teacher would exclude me. some would make their own punishment for this strange boy. Mr. Amin, our math teacher, looked at me from face to toe and mockingly asked the class to stand up. it happened that i came late that morning and he was already in the classroom. He instructed the students to Welcome “His Highness” by singing the National Anthem. They did. He was so cruel to vent his anger in that way. i was down morally.
The same year, in the school holiday, my dad and i travelled to the capital by Half Express train. It was a privilege to travel to Khartoum, envied by my friends and give me times to narrate the wonders i have seen in Khartoum. They do not know that if it were not for this bleeding issues i would have never visited the capital. My wonder was that i had nothing this time to explain why we had to go to the capital. my health was great and no bleeding, being inside or outside.
The discussion was going on that morning with Dr. Faroog and some other big consultants providing more assurances to my dad that circumcision like any surgery would be efferently managed by the administration of the factor, factor 8.
Although i was cent per cent fit, i was admitted at the Pediatrics Section at the Hospital. Factor replacement was planned twice a day. My dad, noting the growing frustration inside me for being injected without a valid reason, he told me we planned to circumcise you. it is a simple procedure and there are no worries. I was a bit relived. Circumcision is something that relates to manhood in that closed environment. A man uncircumcised is not a man.
The day came. The news spread everywhere and our far and near relatives came to witness this “operation”. some of them, had no trust in the medicine at all, objecting seriously and surrendered to the will of my father who swear would never leave his son uncircumcised whatsoever. Three of the surgeons attended the surgery. Dr. Faroog set the hemostatic management plan with close monitoring of all essential parameters. After an hour i was pushed on a wheeled chair to the room. My aunts and other women ululated in joy. i spent around two weeks under the persistence of the medical team who left nothing for the chance. i was under the factor coverage for the entire period. Very minimal bleeding was observed. We returned to our hometown like a victorious army. when the train stopped at the station, we found a fleet of around 4 cars awaiting us. Celebration had to start and many cow blood were shed and many people were coming in to see the wonders, especially elders whom the occasion evoked their bitter memories of the earlier death of my two uncles.
JOURNEY WITH HEMOPHILIA
I am T. Jaipal, 73 years old ,Member and Treasurer of Hemophilia society Pondicherry chapter. My journey remained from South to North and North to South .
I was born on 6thOctober 1950 at Chennai. My father being central government staff got transferred to Jabalpur and we got settled there. Up to 12 years of my age days passed with full of pain and treated with Home remedies. There was a small Rt knee hit and from then onwards spontaneous bleeding occurred with a big swelling and intolerable pain. In spite of pain killer medicine taken, Rt, Knee got totally stiff and then onwards RT Knee had contracture. Then many episodes of joint and muscle bleed occurred, and I started my career along with the pain and Courage given by God .
I completed my HSSC examination and joined Central Government as LDC Staff. From then onwards I reached up to Office Superintendent Level -1, in Administration Division, in no time I became handicapped due to repeated joint and muscle bleed
Things were going normal and one fine morning spontaneous Gum bleeding occurred and it took 3 to 4 days to become normal. In the year 2004, September Intra Abdominal bleed occurred and not able to find reason and 10bottles of wholesome blood given to stop the bleeding. I again consulted with the Dr’s and again Medical checkups was done thoroughly and found that it is blood clotting disorder Hemophilia. Blood Assay was done and found F VIII < 1% which is severe. Then I got Registered in Hemophilia society Jabalpur as a member.
In the month of April 2006 I got Voluntary Retirement leaving 5 years service. I had an opportunity to settle in Pondicherry along with my son and my wife. Since 2011, we settled in Pondicherry. I called Mr. A. Balaji, secretary of Hemophilia society Pondicherry chapter,and he advised me to contact Dr. P. Nalini, and get registered in Hemophilia society Pondicherry chapter. Then Dr. P.Nalini called me over phone to come to office immediately and she examined all the medical records and told to get registered in the Pondicherry chapter. She felt very sad due to disability happened to me
From then onwards Dr. P. Nalini is fully taking care of me. She with the help JIPMER Central Government Health Scheme, received Factor VIII for me as regular prophylaxis. It would not be out of order to say that Prof. Dr. P. Nalini is GOD for Hemophiliacs of Pondicherry chapter providing personnel touch to all hemophiliacs irrespect of caste, creed and colour. This year 2023 Prof. Dr. P. Nalini is awarded with Padma Shri by the Government of India.
I am living peaceful life with the help of Hemophilia society Pondicherry chapter,
JIPMER Doctors, Central Government Health Scheme, and along with my family support also.
Thanking you,
Treasurer and Member
Hemophilia society Pondicherry chapter
Hi, Greetings for the Day.
I myself Mr. Pritish Navnath Desai sharing a story whether its success story or struggle story that you all decide. The guy name Pritish born on 14 October 1985 as a healthy and active baby. All three families Desai Family, Mhatre Family , Pathare Family were into celebration. Their celebration won’t last for long as when I was 1.5 year old I diagnoses with Haemophilia B factor 9 deficiency less than 1 ℅ . All three families are in tense but DIN of Wadia Hospital Dr. Karim Boy and their team help me to meet my success. I have seen lots of bleeds, many times I given the exam from hospital. So many things. I have seen many downs in my life specially love life due to Haemophilia , but it was ok. I have Lost opportunity to join Indian Air Force, also Lost precious job in Icici Bank due to this, but it was ok. But one Company stands with me that’s Jaguar LandRover it helps me grow it teaches me engineering skill, although I am MBA in finance and MBA in banking.
When I look back I See the guy who destroy thousand times and rebuilt. That’s me.
14/6/1994 a day after joining as Paediatrician in Government Hospital Aluva. Called to see a boy with excruciating pain and swelling of the knee joint, I was totally at a loss as to how to manage the case. The patient had a white ID card from Christian Medical College, Vellore identifying him as Hemophilia A severe patient. I rushed to my adjacent RMO Quarters to check with Nelson’s Text Book of Paediatrics as I had not seen a case of hemophilia before. The only option at that time was Cryoprecipitate which was available with the Components Separation Unit at Cochin. With 6 units twice daily he became alright. The child’s younger brother had added Duchenne Muscular Dystrophy also an X-linked disorder that proved fatal and he succumbed to respiratory paralysis below ten years of age.
Brush with this thereto unfamiliar disease made me associate with HFI (Haemophilia Federation of India) Ankamali chapter. At their request, we arranged a component separation license to ensure a free supply of cryoprecipitate the only treatment available. Occasionally the Chapter used to receive factor concentrates from the World Federation of Haemophilia as donations. However, the patient conclave organized in 2012 with the participation of local bodies and ministers proved to be an eye-opener and on World Hemophilia Day 2013 the foundation stone for the first and only Comprehensive Haemophilia Treatment Centre was laid. On February 20th, 2014 the Centre was opened by the Chief Minister who announced on-demand factor treatment for children below 18 and a monthly pension of Rs.1000/- The very next year 20th March 2015 at the valedictory function of the National HTC conclave hosted by us the Chief Minister announced the extension of ODT to all patients and prophylaxis for children in the District. In 2021 the Government of Kerala under the Asadhara programme extended Universal Paediatric Prophylaxis and adult ODT in the state. In 2020 we started nonfactor therapy also and now we have ten kids on Emicizumab. We could contribute in our own humble manner to the advocacy efforts along with HFI. My 50 years long stint with Health Services Department was also helpful. We are helped by the Hematology Department of Amrita Institute of Medical Sciences.
We have 1071 PwH enrolled here (883 HA + 188HB) Looking back on the plight of PwH. Our laboratory has EQADS with WFH and Christian Medical College, Vellore. The centre is a participant of WBDR and just completed 4 years WFHTwinning Programme with New Castle upon Tyne. We have had 24 publications in the last 9 years. WFH recognized our WBDR performance, Twinning efforts, and Laboratory services.
Sufro de von willebrand, ya que la heredé de mi papá. Soy la tercera generación con esta condición, siempre pensé que era normal tener anemia y sangrados abundantes durante mi menstruación (igual que mis tias), pero al salir del país me di cuenta que hay otras opciones para las personas con mi condición y que no tenía que vivir con anemia, así que gracias a la hematologa que me atendió en Ecuador empecé a tomar acido tranexanico y desmopresina, eso me ayudó bastante y pide tener un mejor control del sangrado. Actualmente uso Mirena y la menstruación prácticamente se detuvo. También solo uso factor cuando tengo una operación o extracción dental, y por primera vez tengo factor en casos de emergencia, por lo cual estoy muy agradecida, ya que hace un par de años tuve una operación y durante el postoperatorio tuve una hemorragia y nada de factor para poder controlarla. Solo el ácido tranexanico me ayudó en ese momento. En fin, agradezco a todos los que me han ayudado en este camino de padecer von willebrand y que me enseñaron que se puede tener buena calidad de vida a pesar de los sangrados.
Hola me llamo Nayeli Dueñas soy mamá de Ian Lozano un pequeño de 6 años con Hemofilia A Leve , a Ian le detectaron la enfermedad cuando el tenia apenas 2 añitos en mi experiencia puedo decirles que siendo una enfermedad tan rara y muy poco conocida me inundó y nos inundó a mí , a mi esposo y a mis hijos un miedo terrible y más por qué veíamos a ni ñino tan chiquito y tan indefenso …
Hoy gracias a su tratamiento , a la información que se brinda acerca de la Hemofilia, a los especialistas que llevan su caso y a mi familia por el apoyo hoy mi hijo lleva una calidad de vida mejor y esperemos que así siga …
Un beso y un abrazo desde Guadalajara Jalisco México !
Hola me llamo Casandra Ramirez y soy madre de un hijo hemofilico ,se llama Juan Antonio de 16 años, el cual tiene 2 hermanas mayores podrán imaginarse que Juan siendo un hombresito después de 2 mujeres ,me sentía realizada como madre ya mi hijo varón y fue 6 meses después de su nacimiento que descubrimos que era hemofilico , en esos momentos mi mundo se vino abajo ,solo pensaba que mi hijo moriría en cualquier momento ,no teníamos nada de conocimiento referente a la enfermedad ,ni medicamento ,…fue tan doloroso ver Ami hijo llorando por las noches con tanto dolor en sus tobillos por el simple hecho de querer llevar una vida como cualquier niño de su edad..pero gracias a Dios a la edad de 6 años buscamos ayuda en otro estado ,llegamos a nuevo león directo al hospital universitario buscando atención para mi Juan y así fue me dijeron que podía llevar su tratamiento y atención personalizada con hematólogo,trauma,genética…y fue ahí donde aprendimos a tratar la hemofilia cómo un padecimiento llevadero con sus cuidados y profilaxis pertinente ,agradezco enorme mente a la Dra. Villarreal encargada de la clínica de hemofilia y la Lic. Laura Páez nuestra trabajadora social que siempre nos llevan de la mano cada una en atención física y atención emocional ya que la Lic. Laura Paez siempre está al pendiente de que nosotros como padres seamos responsables y puntuales con esta atención para nuestros hijos …desde que llegamos a la clinica de hemofilia del hospital universitario nuestra perspectiva de vida cambio ,hoy por hoy se que mi hijo puede realizarse como cualquier otro adolescente y todo es por educarnos respecto ala hemofilia y claro llevar su profilaxis correctamente ..nunca perdamos las esperanzas …gracias
Hola buen día
Solo paso por aquí a saludar y a contar
Soy portadora Hemofilia Severa
Tengo un hermano vivo Hemofílico y uno ya fallecido
Dos primos vivos
أطيب التمنيات باليوم العالمي للهيموفيليا انضممت إلى الاتحاد العالمي للهيموفيليا في عام 2015 – في البداية كمدير إقليمي لإفريقيا والشرق الأوسط والآن أغطي الشرق الأوسط فقط. كانت السنوات الثماني الماضية رحلة رائعة للقاء العديد من الأشخاص الملهمين المصابين بالهيموفيليا والأمهات والآباء والإخوة والأخوات ولقاء الأشخاص في المجال الطبي المهني الذين يعتنون بهم والحكومات التي تدعمهم. من خلال هذه الرحلة ، تعلمت أنه من خلال الجهود التعاونية لجميع أصحاب المصلحة ، يصبح حتى الهدف الأكثر صعوبة أو بعيدًا ممكنًا. إن الجهود الدؤوبة لهذا المجتمع هي التي ستستمر في تحقيق اختراقات في توفير الوصول إلى العلاج لمن هم في أمس الحاجة إليه. استمروا في العمل العظيم. إنه لشرف لنا أن نلتقي بكم جميعًا ، ، وأن نقرأ قصصكم الجماعية وأن نعمل عن كثب مع العديد منكم وندعمكم بأفضل ما نستطيع
I wanted to share a really nice experience I had recently with one of our adolescent females, with Von willebrand disease, who has moved from children’s services to our adults.
She had seen our consultant in clinic & arranged to come & learn how to self inject DDAVP for period management, alongside starting tranexamic acid.
Asides from making me feel old because I remember her being born, her dad has Von willebrand disease and we look after multiple generations of her family, it was really great to spend some quality time with her going over her disease, access to care & teaching her how to treat.
About 10 days later she made contact and asked to come back and run through some bits. I thought perhaps I’d missed something with her self administration education but on arrival she produced a list of questions for me.
We proceeded to spend 45-60 minutes going through more details about treatment options, including an introduction to treating with Von willebrand factor concentrate if DDAVP did not prove adequate for bleeding control. We discussed how & when she can access treatment, other options for period management including the option for joint review in our gynaecology/bleeding disorders clinic, supporting her in university choices, holiday advice & general day to day advice & discussion about her condition.
Unfortunately this young lady fell victim to nearing adult transition during the COVID pandemic and therefore didn’t get the same options of regular joint appointments. Luckily with her family knowing the adult team well she felt comfortable coming in & discussing her options for access care & treatment.
At the end of the day, this is why I love the job I do, because these two conversations have been beneficial to the affected Individual & their parent in providing reassurance about their next steps in life & that we have other treatment options available. I was also able to let her know that the bleeding she was experiencing isn’t normal & we can help to resolve that as well as provide iron supplements to support blood loss until bleeding settles.
My Brain surgery with the help of Afstylia Factor support from WFH
Sankar@ Sanakaranarayanan
I am Sankar@ Sanakaranarayanan from Tindivanam, South India hails for lower socio economic group. In my child hood I was taken to various Hospitals for various treatments for my various bleeds and nobody diagnosed me as Hemophilia. I suffered many bleeds like oral bleeds, joint bleeds and muscle bleeds,and I, and at the age of 7 only I am diagnosed as Hemophilia A. I have 1 elder sister and 4 younger sisters and my 3 nephews are affected by Hemophilia A . Before 25 years there was no factor and all the way Plasma was transfused and it was given for all treatment and surgeries also. Later I found that there was a registered society in Madras for Hemophilia. So I and my 3 nephews registered in Madras society and we went for treatment in Madras Society.
Some years later I heard that Dr. P. Nalini, Professor of Pediatrics, JIPMER, Pondicherry (Retd) had started Hemophilia society Pondicherry chapter and I submitted all the documents of myself to Dr. P. Nalini and I became a Life Member of the Pondicherry Hemophilia society. I underwent 2 major surgeries and with the help of Factor from Hemophilia Federation India, New Delhi and also support given by Dr.P. Nalini, which are all Free of Cost. In the year 2018, I had severe fever and I came to JIPMER and there I was diagnosed as Malaria and due to Malaria I had blood clot in my brain and the clot was diagonised by Neuro Surgeon of JIPMER and open surgery was done in JIPMER, which was also Free of Cost , and full Factor support(Afstylia) was given by Hemophilia society Pondicherry chapter obtained from World Federation of Hemophilia, through Hemophilia Federation (India). After my surgery I was supported by Factor for 6 months as prophylaxis and I am fully recovered. In spite of various bleeds and I am fully recovered from IC Bleed ,and I am now normal. My family members express their gratitude to WFH , HFI (India) an Hemophilia society Pondicherry chapter
Thanks to all
E. Sankaranarayanan
M. NO. 53
Hemophilia society Pondicherry chapter
The Haemophilia Association of Mauritius wish you all a Happy World Haemophilia Day 2023. Access for all. Cheers to all our Heroes.
Rajesh Neelayya
President
Haemophilia Association of Mauritius.
As hemophilia caregiver , many positive stories are with me, but most exciting ones are : life of one child with brain Hemorrhage is saved with continuous and untiring efforts of his mother and now that child has normal actovity without any residual disabilty , it is really most satisfying event in my life as hemophilia physician and other adult patient came to my care when there was plan to have amputation of the leg and with personal care leg is saved .That boy had nailing a d plating for fracture without factor support
My son is now 2 years old. He was diagnosed with Severe Haemophilia with a less than 1% Factor VIII at the age of 10 months. It was hard at first especially because no one in my family had Haemophilia. Duncan has a spontaneous mutation. But it gets easier the more you get to learn about haemophilia.
Soy Fendi de República Dominicana, tengo hemofilia A (Severa) y mi hija Sendi es portadora, mi familia está comprometida xon la hemofulia.
¿Mi hijo, es hemofílico, y ahora qué Hago?
Mi Hijo nació un 21 de Marzo del 2013, su mami y yo le pusimos como nombre de pila Samuel Alejandro Prado Pereira, Samuel por ser nombre del Profeta Samuel, que significa “hijo aclamado por Dios” y Alejandro por que la combinación del nombre fue toda una bendición. Llego al mundo a las 9:30 am de ese día asoleado y ansiado por todos, mi efusivo padre estaba junto a mí a la espera de su alumbramiento, y su mamá ingreso horas antes a la clínica Santa Rosalía ubicada en la ciudad de San Juan de los Morros, la cual junto a su equipo humano se portó a la altura de tan importantísimo acontecimiento, traerlo al mundo sanito y salvo.
Y con la gracia de Dios omnipotente y misericordioso nació, fue tal la emoción que no sabía si llorar, si reír, si gritar, eran tantos sentimientos encontrados, que corrí a decirle a papá que aguardaba en la habitación Nro. 01 de la Santa Rosalía, a darle la noticia de que mi hijo, Samuel había nacido, exclamándole: ¡Papá, viejo querido, nació tu nieto, un catire hermoso, igualito a ti, papá, de nariz perfiladita, blanquito como la leche y catire como el sol resplandeciente que hacia esa mañana hermosa y por demás inolvidable!
En cuestión de minutos bajo la doctora, hoy su pediatra de cabecera quien asistió al parto de mi esposa bella, Manuelbis, diciéndonos: “aquí esta esté catire hermoso, ha sido uno de los mejores y más placenteros partos que he tenido, nació sanito”, fueron las primeras palabras, que recibimos de tan honorable médico, la Dra. Adalgia Aguiar y enseguida se llenó el cuarto con la abuela materna, mi suegra María, su amiga Maritza, amigos y compañeros de trabajo y todos estábamos felices, y al ratico trajeron a su mamá, y le colocaron al lado para que le viera y comenzara el más lindo proceso de crianza, amamantarle, llego pesando 3.200 kg y midiendo 50 cms, todo un bebe Gerber. ¡Hijo mío, mi Samuel cuanto te amo…!; eres mi primogénito.
Este alumbramiento fue todo un éxito, todo había salido como se esperaba, gracias a Dios y a la virgen, el parto había llegado a feliz término. De la clínica Santa Rosalía, salimos al siguiente día 22 de marzo en horas del mediodía a nuestra morada, allí aguardaba el cuarto debidamente decorado para Samuel Alejandro, en las horas siguientes ya comenzaba la ardua tarea de amamantar a Samuel, resultando un aprendizaje sine qua non, allí supe al menos quien escribe, lo que significaba ser padre, y lo importante que es la leche materna y toda esa proeza que realizaba su madre Manuelbis en alimentar a este retoñito otorgado por la naturaleza y bendecido por Dios.
Al paso de los días, exactamente el número 8, se terminó de desprender su cordón umbilical, el cual guardo celosamente como recuerdo. Me tocaba, aprender haciendo, como tenía que hacer para cambiar el pañal, Dios, de verdad que es admirable y no me canso de decirlo, lo que deben hacer las madres para con la crianza de sus hijos, en esos días tuve que aprender, a bañarlo, a cuidar y velar su sueño, fueron horas, y días de ex trasnocho, pendiente del más mínimo detalle, de modo de asegurar que el nuevo rol de padres se llevara como debía ser, apegado a las buenas costumbres y valores enseñados por nuestros padres.
Ya al cumplir el mes, Samuel había dado la vuelta, como se le conoce en el argot popular, es decir, había cambiado lo suficientemente para expresar: ¡se parece bastante a su mamá!, ¡no mejor dicho, a su papá!, o tiene de ambos características que hacen ver que realmente Samuel es toda una belleza de bebe, un bebe Gerber, igualito al de la foto de las compotas de una marca reconocida, el parecido es deslumbrante, con la humildad que me caracteriza, risas, jajajajajaja.
La mamá de Samuel, Manuelbis, yo la llamo esposa bella, siempre impaciente, y claro con Nathalia, cariñosamente le llamamos <
Ya entrando en el cuarto mes, un día sábado por cierto, en casa de la abuela materna, tuve como de costumbre despertarme muy tempranito 5 y media, de ese y tantos sábados, ducharme, vestirme, tomar cafecito, y adentrarme camino a la Universidad, en virtud de que estaba cursando 3 año de la carrera de derecho y no podía abandonarla por nada del mundo.
Esa mañana, mi esposa bella, le dio de comer a Samuel Alejandro, y cuando lo dispuso a cambiarlo se dio cuenta de un enorme hematoma al costado de la espalda, parte baja, llamándome inmediatamente, con lloro y voz quebradiza que si a mí se me había caído Samuel Alejandro, cosa que de inmediato dije que no, que nunca se me había caído el bebé, tuve que ausentarme de clases esa mañana e irme hasta la morada de mi suegra, allí vi al bebé, y la verdad que llore al verle ese tamaño moretón. Cerca ya del mediodía, interrogamos a Nathy, tristemente la culpa estaba recayendo sobre ella, aunque Nathy siempre asentó con su cabecita y su mirada de inocencia que ella no le había pellizcado y mucho menos pegado a Samuel Alejandro, cosa que le creímos pero en cierta forma aún persistía la duda.
¡Ante el Diagnóstico de la Condición de Hemofílico de Samuel Alejandro!
El evento solo no paso de ser un buen susto, y tomar más previsiones sobre todo con Nathy para que no volviese a ocurrir algún otro episodio como este. Enseguida, por iniciativa de la suegra María, nos dice: porque no le hacemos un examen de Hemofilia a Samuel Alejandro, para descartar eso o simplemente aceptar la condición y ponernos a tono con lo que sería convivir con esa condición y todo lo que conlleva conocer y afrontar esta penosa condición, el tener un hijo, Hemofílico, dado los antecedentes familiares, y la pregunta que al menos nos hicimos, ¿qué hacer?, ¿a dónde ir?
Ante esta situación, decidimos ir con Samuel Alejandro al banco de sangre del Hospital Central de Maracay, allí luego de haberle realizado el examen de sangre, específicamente el de la Protrombina (TP) y Trombina, (PPT) es decir, el tiempo de coagulación sanguínea, resulto que efectivamente Samuel Alejandro presentaba Hemofilia “A” severa, menos del 1%, de Factor VIII. No obstante, ya con la casi certeza que nuestro hijo Samuel Alejandro padecía esa condición, nos trasladamos al Banco Municipal de sangre (Distrito Capital). Donde está constituido de igual manera, el Centro Nacional de Hemofilia (C.N.H.).
En este Centro, son atendidos por especialistas todos los pacientes hemofílicos. Allí, fue que conocimos la existencia de la Asociación Venezolana para la Hemofilia, (A.V.H.) la cual es una Organización sin fines de lucro, creada en 1971 e integrada por socios activos, benefactores, médicos, pacientes, familiares y colaboradores en general, con el principal objetivo de proporcionar una atención integral a las personas que padecen de esta cuagulopatìa, así como la concientización y divulgación acertada respecto a las causas, efectos y tratamientos de esta condición.
La (A.V.H.), cuenta con un equipo Médico altamente calificado, a nivel nacional, que brinda a los pacientes servicios como: Diagnóstico de laboratorio para diferentes tipos de Hemofilia y otras coagulopatias. Registro de pacientes a Nivel nacional. Consultas permanentes con hematólogos y especialistas en Ortopedia. Tratamiento sustitutivo por vía endovenosa. Educación dirigida a los familiares y pacientes para que conozcan los limites. Proyectos sociales para mejorar la calidad de vida de los niños, adolescentes y adultos con Hemofilia. Es un trabajo en conjunto de la (A.V.H.); (C.N.H.), y (F.M.H.), para la obtención de grandes logros y avances en la mejoras de calidad de vida de los personas con Hemofilia (PCH).
Con esta información de entrada, fuimos atendidos y logramos que le realizarán los exámenes de rigor, al cabo de unas cuantas horas, esperábamos ansiosos los resultados que corroboraron lo que ya presumíamos de antemano, nuestro bebé, padecía de esta condición.
Nuestra reacción no se hizo esperar: Dios, fue impresionante ver como nuestras miradas hablaban, nuestra angustia se apoderaba de nosotros, cualquier cantidad de dudas, de preguntas, pasó por nuestras mentes. Samuel Alejandro, ya contaba con tres (03) meses, y la pregunta que más nos acechaba era y ahora que hacemos?. Bueno, con la ayuda y charla informativa que nos dieron en el (C.N.H.) hizo calmar y bajar un poco nuestro nivel de angustia. Lo primero que hicimos, fue aceptar la condición de Samuel Alejandro, confieso que aún a mí me ha costado asimilarla, pero debemos seguir adelante.
Hacerse a la idea de esta nueva circunstancia de verdad requiere a veces mucho tiempo y mucha dedicación para combatir la angustia inicial. La severidad de la Hemofilia de nuestro hijo, nuestra manera de ser, nuestra actitud para afrontar las adversidades y la cantidad de apoyo que recibimos inicialmente de parte de la familia de mi esposa, los cuales tienen antecedentes de Hemofilia por generaciones, ha ayudado de cierta manera a influir en la superación de esta etapa de nuestra vida.
Como anécdota que aún está presente en mí y que fue mi primera reacción era de incredulidad, de aparente indiferencia, incluso de dramatismo. El desconocimiento de lo que es la Hemofilia me hizo al igual que a mi esposa, ella aún a sabiendas de los antecedentes familiares; nos conllevo a estar todavía más preocupados, más ansiosos de saber más y más de esta condición. La preocupación, incluso la rabia, la decepción, la culpabilización, la pena, son estados de ánimo comunes a todas las personas que han pasado por nuestra misma experiencia. Pasar por ello es casi necesario para evolucionar y llegar a aceptar paulatinamente lo que conlleva la Hemofilia.
Cuando Samuel Alejandro aprendió a dar sus primeros pasos, quería era correr, lastimosamente no paso por el proceso de gatear, en virtud de que no fuese a aporrearse sus rodillitas y sus coditos, por lo que aprendió a caminar ya hacia el año y medio. Mayor alegría la que vivimos con las diferentes travesuras y ocurrencias de Samuel Alejandro. Hemos y estamos atravesando por una situación no nada fácil, pero con la ayuda de Dios y de todos los que de una u otra forma están en contacto a diario con nuestra Hemofamilia, nos sentimos con fortaleza para seguir brindándole una mejor calidad de vida cada día.
Así pues, estamos en este proceso de asimilación y convivencia con esta condición. Será entonces, cuando surjan las primeras preguntas alrededor de la Hemofilia y por qué debe pincharse y seguir tratamientos. Samuel Alejandro a sus cuatro (04) años de vida ha tenido algunos episodios, productos de caídas que han generado ciertas hemorragias y por consiguiente hematomas, teniendo que aplicársele el tratamiento como lo es la infusión del Factor VIII, ya se le han colocado aproximadamente unas 60 dosis que oscilan entre 250, y 500IU, claro está según la gravedad de la lesión.
Imaginemos por un momento ¿Qué diría Samuel Alejandro, en su primer día de clases y su condición de Hemofílico?
Samuel Alejandro: Papá, que emoción mi primer día de clases, pero mis amiguitos no llevan puestas estas rodilleras y coderas, y porque yo sí?
Mamá y Papá: Hijo, debes llevar puestos tùs rodilleras y coderas, para que protejas, tùs articulaciones, si están bien protegidas y con previsiones básicas durante tú crecimiento garantizarás que tengas un cuerpo normal en el futuro, lo puedes confirmar con otros niños con Hemofilia que han practicado esto. Así tu cuerpecito crecerá sano y fuerte.
Samuel Alejandro: Papá, la maestra me agarra mucho de la mano y no me deja jugar con mis amiguitos, Porque?
Mamá y Papá: Samuel hijo, tùs amiguitos y maestra necesitan conocer la Hemofilia…! ¡Ser diferente hoy, te hará más fuerte mañana¡
“Tenemos que aprender a vivir con esta condición de tener Hemofilia, no renegar de ella porque no la podemos desaparecer, si la aceptamos con amor y prevención podemos tener una vida normal….mamá y papá, te quiero mucho”…Samuel! .Adaptado Prado, (2017) y tomado de la Revista, Hemofilia Niños, Nubia Luque, (2002).
My age is 24 , suffering from hemophilia VwD factor 8 disorder , in this case heavy bleeding in period every time I need blood platelets or factor .But after passing time I understand my problems , compromise on some things like I am interested to join Airforce but I can’t because I can’t do such training that is necessary in Airforce . So first I understand that I m different from other people and I have enough energy to do other things in better ,I will choose that thing I know it’s difficult painful process but we have to do it for ourselves.
Hola, mi nena fue diagnosticada con von Willebrand tipo tres y recientemente con hemofilia, ella ya escribio su historia y solo comparto su fotografia, en la cual fue reina de la primavera de su escuela.
•I am not a woman with a bleeding problem, but I met a boy five years ago who suffering from severe type of hemophilia.
My nam is Eli, I am from Iran .I am architecte and that boy was cinema director.
That boy also has a different job ! He was a good manager of hemophilia society of Iran in our city.
We met each other five years ago in language institute, I heard about his job and I was wondering what are they doing there. After a few months finally I found myself in his office (hemophilia society). It was great because they helped to the hemophilian people to get their medicine! Finding a good job for them and also teaching them and their family to make them understand about their body,the sign of bleeding,and everything that they needed to know as a physically or mentally.After while I started to helping them too,but just like extra helper not like them actually.I liked him because he was wonderful person,he cares about the patients and it was beautiful for me. One day I get that I in love with him and I get that he does love me too. After a year our love was much more than before.
We loved each other but something was wrong between us! He had kind of obstacle for me! I didn’t get that and I was unhappy and thought he is not like before or he won’t continue more than this! Util one day when we were alone he told me sit down , I have to tell you something that I never said to even my bests friend, It’s my secret, I don’t want to people see me as a different boy.I was stressful and he told me ” I am a hemophilia person too , Type A”!!! And continued ,I understand it should be hard for you, I love you but this is my big problem,he stopped talking and just looked at me.
Wow! I was wondering, he became to my hero, he was too strong, who tell that hemophilian children can not help to the other people or have no good job,have not good education or can’t be a bodybuilder!! I was silent and thinking about this! And asked him whay you didn’t tell me before?! He said I really love you and I afraid of telling this to you because I understand it should be hard for you, I can understand your feelings now and also told me this is my weakness, I won’t tell this to the other people cause their look will changed! He was sad and he thought I wanted left him, and he told me if you want to left me it’s correct time. I said no, you can’t understand my feelings, whay am I should left my love?!! I just hugged him as hard as I could . I told him it doesn’t matter for me, I love the way you burn,I love you even more than before. I want to be with you forever. And I get that whay he had a obstacle for me!! when I Came back to my home I thought how much he can loved me and trusted me to share his secrets to me! And I was really feeling happiness. We fall in love together and after a while we decided to get married together. When We went to honeymoon , when we were ready for sleeping at first night he said I would like to tell you a story and I was too happy like a child and he started: when I was a child Iran decided to production hemophilia factors from human blood , but they weren’t carful to choose a right and clean ones . It wasn’t enough foreigner medicine at that time too, so we had to use of them. But after few months we thought that medicines was viruses, and because of that some of the children attacked to HIV,some of them Hepatitis C ! And I attacked to hepatit C ! . My heart just stopped biting . And he continued sorry I was afraid to tell you about this because I am afraid of losing you! Don’t worry,I really take care of you and I will be very careful like before. At that moment I didn’t know about the HCV but i was really sorry for all of them and felt shame for our government and also those doctors! I started to breathing and crying,asked him “are you ok now?what shuld we do? I don’t wanna you die?!” And he laughed at me and said we should be hopeful for coming the new medicine. And I was just loving him like before and nothing changed for me. Every thing goes well until I understand my husband didn’t have special health insurance that the hemophilian used it,and when I asked why he told me,because I said to reporters for many times in medical magazine the government should give us enough medicine (factor)! But after last report of mine they just cut my insurance,and I have to use from my brother and some of my friends medicine! That’s broken my heart!
And finally he found it they don’t care about them so they decided to organize their medicine, cause the medicine wasn’t really enough for all of them.And I found it beautiful,
They helped each other to be alive. Until one day we heard one of this child died because of lake of medicine in hospital!!! We were really sorry,and the other day we heard again about one of them,and one of them! That time my husband was really angry and he started to have a new interview with the government newspapers! And he just said that the insurance government doesn’t give us our medicine, they are thieve from our medicine budget! It’s enough! After a few days my husband was disappeared for three days!
One day after that his interview,they arrested him in his office without any explanation and after few days they finally left him. Yes,they tortured him and of course they oust him from his job.
Now we are here in (Turkey) ,so we had to find a way for getting medicine for my husband how was at that days ill and even he walked hardly. Because of lack of factors,he had inside bleeding (cause of hitting him )We didn’t know their language and no one knows English! We went to all of hospital in our city here and they couldn’t help us! After four months they decided to talk about our problems and one of them told us “you should wait,we have to decide,we will call you if it was ok!” For me it was like go and watch your husband diying!!
After a month they call us and said ok,you can come and take your medicine! Wow ,I was really happy and started to cry because of my husband life. Yes,they finally gave us that medicine but it wasn’t easy for us,we didn’t know no one,no language, no home,no nothing. I just try saying my story in short way here!
After all we had to finding job for our lives. Finally by the men who wants to help us ,we don’t know why! But we started to working at a cafe. It was hard for us,we worked as a waitress and me as a cleaner in the kitchen.
It was hard but we decided to do anything for our life. But after few months my husband felt so pain in his liver, that job was redline for hemophilia person but he didn’t care about himself. We afraid if that pain is cause of Cirrhosis of the his liver . One year before he had a test and his results was near two million and now his enzyme was about ten million from two million! Because of the smoke was in the cafe, our meal and also our time sleeping! All of them was awfull. We worked 4 pm util 4 am. They gave us one time food but it wasn’t healthy ! They gave to the personel all of the material was in the kitchen but they were rotten food !! We didn’t die but were sick all the time,and we couldn’t sleep enough for the other day! One day we understood by our dear friend Kathleen in USA , there is a medicine for hepatit C ,and she gave us some information about that medicine “HARVONI “. I was really happy when heard about and when we asked here , they told us we waiting for that medicine too! So we had to wait too again.His pain became day by day worse, we could just praying. One day after 3 months we found out it’s came.
So our job was just started. We asked from doctors how can we get this medicine ?And no one could help us again!But we didn’t stop and we went anywhere that we could and knew! Turkey insurance government told us ,that you can not get this medicine because you are not a citizen here,yes we are as refugees here cause we didn’t have any choice! No one cares about our life here too! But every time we heard a unpleasant news from them but we didn’t stop,we just counted !After hard and intolerable sixth months finally we get that hard medicine,and now my dear and lovely husband using of them. One month later it will be finished and after three months we have to take a new test,if it was clean and negative results so that means it worked.we did it together.I am still learning from this women and men who has a bleeding problem,they are all strong in all around the world. One of them who helped me to save my positives energy and never give up, and specially teaching me every day and proved me that it doesn’t matter where are you from,which color skin,what religion do you have,just one thing it’s matter “you are a human” , and it doesn’t matter how could be hard to help someone from the other world to another world ,we can always do! I love you all.
With respect Eli
Mi historia no tiene que ver con sangrados, con lesiones físicas, ni con dar consejo alguno, mi historia es de una madre que luchó por tener un hijo sano, lo logro, logro que físicamente estuviera fuerte, pero tuvo un costo que a lo largo de los años se sentía venir, el costo de tanto recorrer hospitales, de convencer a los especialistas, de luchar por medicamentos, buscando la forma menos dañina de dejar fuera los sueños de un niño de pertenecer a las fuerzas armadas por ejemplo, limitando su vida a cambios constantes y llenando de inseguridades que se reflejan a la hora de evaluar un contenido en la sala de clases, pero como no ser inseguro si la tierna edad de la infancia, nadie le puede dar seguridad alguna que todo pasará sin complicaciones, cuando la vida siempre está en juego, cualquier motivo de juegos es visto como un descuido mortal, cualquier deporte entretenido en el cual eres el mejor es demasiado riesgo que correr, es la tierna infancia en la cual la seguridad que todo niño tiene para fortalecer los lazos afectivos, no puede con padres que están recién aprendiendo, escasean las destrezas sociales cuando no existe estabilidad y faltas mucho a clases, la esperanza que todo lo puede lograr si es con esfuerzo acá no vale, decirle a un niño que cree en héroes en superpoderes que no sueñe y se cuide cuando no estén sus padres para protegerlo que sea responsable, que sea consciente de síntomas y dolores.
Hi My name is Fiona McDonnell I am a 51 year old mother of an 18 year old boy with Severe Haemophilia Classic A. I am also a carrier of the mutated gene. (as is my mother) Until the birth of my son I never had any real understanding of what Haemophilia was or how it impacted the lives of those affected. My son’s story now he is 18 is totally up to him to share. So I will focus on my health implications. My mother suffered very heavy periods (menorrhagia) and so when my periods where very heavy I just saw it as hereditary. As a business woman I often chaired meetings with my peers most of whom are male and spent very anxious times hoping I had not bled through during meetings despite multiple pads, super tampons and other precautions. Rinsing clothing out in Hotel bathrooms and Petrol Station washrooms was an embarrassing and distasteful operation, but functioning at work was a priority for me I simply had to do my best to not embarrass myself or others. A breakthrough came in the form of a casual conversation with a friend at Haemophilia Victoria’s annual Family (Community) Camp. It was the first year my husband had not attended and gave me the chance for some “private girl talk” I had never realised my menorrhagia could be related to the factor deficiency – sounds crazy, but my generation were told we couldn’t have “real symptoms” This wonderful Mother and her teenage daughter told me of using Tranexamic acid to alleviate this problem and that longer term an IUD could be a solution. My next visit to my GP had us discuss my options and what had been a really terrible time of the month became normalised and managed very easily. What I hope sharing my story does is help someone else to see themselves in my story and get the help they need to be more able to participate in life.
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Iranian women and girls have menstrual bleeding in women eye for eye invitees About World Hemophilia Day to speak and tell of your problems
My family and I lived in Zarqa – Jordan. It was the first time we know about hemophilia after the birth of my first child. At the beginning of my child’s bleeding after circumcision I went to the nearest private hospital. After the tests, the doctor told us that he would prefer to go to a public hospital with the possibility of hemophilia.
At the Zarqa Governmental Hospital and after knowing the type of the missing factor ,he was given factor 9.
I ‘ve been told by the doctor that if you see any bruising or crying of the child for no reason, bring him directly to the hospital.
Two weeks later, my child was registered at the Hemophilia Center in Amman and we received enough information about the disease. The treatment plan has been developed by the center, If the factor is available, the patient can be given once a week.
I love Hemophilia ❤
hola soy darling campos soy portadora de hemofilia , y tengo un niño de 2 años que padece hemofilia tipo A MODERADA.ESTA PRESENTANDO UN CUADRO DE PROFILAXIS ALTA Y SE ESTA VIENDO MUY AFECTADO YA QUE EN VENEZUELA LAS COSAS NO ESTA FACIL Y NO TENEMOS TRATAMIENTO PARA QUE EL PUEDA CUMPLIR Y SALIR DE ESE CUADRO. SOLO ESTAMOS EN MANOS DE DIOS QUE MI HIJO SIGA LUCHANDO Y AUNQUE NO ES FACIL VER A TU HIJO QUE NO PUEDA DIVERTIRSE COMO TODOS LOS DEMAS NOS AFECTA PERO ES POR SU SALUD .,SOLO PEDIMOS AYUDA PARA ESTOS NIÑO DE DISTINTAS HEMMORRAGIAS Q TENGA SU TRATAMIENTO Y AL QUE NOS PUEDA AYUDAR DONANDO AL BANCO MUNICIPAL DE SANGRE DE VENEZUELA -CARACAS CENTRO NACIONAL DE HEMOFILIA.DIOS TODO LO PUEDE
I’m 37 and I have a 5 year old son with type B factor 9. He is also being evaluated for AD/HD. It has been a struggle with having to keep him calm down so he doesn’t hurt himself. It has happened quite often.It runs in my family my brother, 2 nephews all have type B along with Ad/hd. My two sisters and I are carriers. Our kids has the best hematologist Dr. Singleton at Tulane medical center and the greatest team.
Sometimes the stories of life seem like the stories of books, my story was like that, it can also be called the story of getting life back.
It was mid-year 2014 when I first needed surgery for gallbladder stone removal through laparoscopy in Chattogram, Bangladesh in a private Hospital. The operation was successful but the internal bleeding couldn’t stop, my physicians all are surprised because they couldn’t find any cause for the internal bleeding. After 15 days from Chattogram to Dhaka I need to shift to better treatment. During those 15 days, I was also in a hospital bed losing lots of blood. Meanwhile, my physician in Chattogram did another surgery called laparotomy to find out the root cause of bleeding. Unfortunately they can’t stop my internal bleeding.
In Dhaka another private hospital physician again opened my abdomen and place a surgical foam and take under observation. After a few days my physician observed that the bleeding not stopped. In that time he sent my blood sample in India for Factor level check purpose. In the meantime I need to spend 45 days in an expensive hospital in Dhaka around 45 days. My family needs to sale our some properties and assets for my treatment purpose. At last, the report came from India that I am Haemophilia B positive patient.
Those two months turned my life into a big U-turn along with my family.
Due to back to back-to-back surgeries, I need to again lay in an operation bed for repair Hernia surgery in Chennai, India year 2018. For those operations, I needed to take Factor IX which was very expensive. I lost more than four years but learned what Haemophilia is how to manage it and finally I learn the truth about my life that I am special one who was chosen by Allah from the all human being Allah who will special take care of me. I am not afraid I am not alone.
“Life is not beautiful, it’s so colourful “
I found this page while searching about my hemophilia diagnosis.
My Name is Cindy Nogueras, 28, from Puerto Rico. Back in July 2023, while I was unknowing fighting for my life was diagnosed with Hemophilia factor XII also known as HAF deficiency, Hageman factor deficiency, Hageman trait. Factor XII deficiency is a rare genetic blood disorder that causes prolonged clotting (coagulation) of blood in a test tube without the presence of prolonged clinical bleeding tendencies.
It is caused by a deficiency of factor XII (Hageman factor), a plasma protein (glycoprotein).
The condition caused bleeding in my knees which has left me temporarily in a wheelchair, and stiff leg which can’t stretch due to the loss of the meniscus and cartilage.
This condition is also accompanied by agammaglobulinemia, which means I don’t have the protein which creates the immune system, and I will be having infusion for the rest of my life to treat it.
Although I Was mostly in and out of the hospital growing up, no one ever knew why, once I had a bad fall no one couldn’t tell me why my meniscus and cartilage were getting wear out. Until May 2023, I ended up in wheelchair with a bad pain and bad cramp from leg to knee, my rheumatologist sent me to emergency in suspicion of a sepsis on my knee.
I stayed in the hospital for about 19 days, 4 days in emergency room and 15 days up in a room, with many doctors and specialists visiting, from cardiologists, rheumatologists, orthopedics, hematologists, internists, immunologists and there they found my hemoglobin was in 4 and dropping, a bacteria in my blood, the hemophilia and the agammaglobulinemia.
Although I know neither have a cure, and will always be a part of me, I haven’t stopped doing what I love, I go to events of cosplay, work related events, and my photography hobby. Even if I can’t work now at what I got a degree on, I’m happy to be alive and continuing what I’m doing, with my family supporting me through this journey, mentally and physically.
health insurance doesn’t cover everything but we do everything we can to deal with it.
Yo bien agradecida con la lic.laura Paez y la doc.laura villareal de la clínica de hemofilia del hospital universitario.ya once años que mi hijo es atendido ahí ,es una excelente atención con su gran equipo multidiciplinario,nos han enseñado tantas cosas ,de como debemos llevar una buena profilaxis y poder nosotras mismas infundir a nuestros hijos.gracias a su atención podemos llevar una vida normal .
My name is Eliza VanZweden, and I am writing to share my journey as a woman living with Glanzmann’s Thrombasthenia. GT is a rare bleeding disorder caused by a platelet defect in which platelets do not aggregate to stop bleeding.
I was diagnosed shortly after birth in 1999, due to symptoms of birth trauma. My path to diagnosis was certainly more painless than others, as my older brother had already been diagnosed with GT. Growing up, I struggled with many nosebleeds which would often bleed for days. For these and other serious bleeds like throat and GI bleeds, I received many on-demand platelet transfusions in my youth. There are very limited treatment options for GT patients, who are often left to resort to platelet transfusions, Factor VII bypassing agents, or tranexamic acid. There are no prophylactic options available for GT patients currently.
As I grew, I learned about the risks associated with platelet transfusions – they should only be used to stop bleeding in emergency situations due to the risks of developing antibodies. This left me anxious – my only treatment option could become ineffective at any time and fail me in an emergency situation when I need it the most. The trust that all my bleeds will be solved with a platelet transfusion was replaced with worry surrounding every bleed and debating every time I bleed how much is “too much” before I go in for treatment – does a nosebleed need to last 8 hours before getting a transfusion? Or should it be reserved for one that is bleeding for 4 days?
As I transitioned to adulthood, I have recently faced my most challenging symptoms. My health is no longer only focused on my bleeding disorder, but also encompasses my bone, reproductive, and mental health due to long time suppression of periods using hormonal therapies. More recently, I suffered a thrombotic event which left me with a portion of permanent blindness in one eye. This experience, as well as my struggles to control my nosebleeds and menstrual bleeding has left me hypervigilant of how being a GT patient affects every aspect of my health.
Although I still struggle with knowing when to get treatment for severe bleeds and don’t have access to prophylaxis treatment, preventative care has still been key in managing my bleeding disorder. This involves minimizing my risks in every activity or environment, and being prepared for every situation.
The bleeding disorders community I have come to know through the World Hemophilia Foundation and the National Bleeding Disorders Foundation (NBDF) in the United States has proved to be an invaluable support and resource. I have met others who have the same bleeding disorder as I have and am inspired to be an advocate for this community <3
I have a child, named Aaron, who was diagnosed with Hemophilia A Severe, when he turned 1 year old in year 2010. He had an episode of intracranial hemorrhage at the age of 2, which almost cost his lives and along the way, had many joint bleeds episodes. At that moment in time, all the hospitals in Sabah, only provided On-Demand therapy.
I was fortunate to be able to communicate and gain knowledge from all the treaters from hospitals and universities, especially the hematologists. In early 2014, I had collaborated with a hematologist from the University Malaysia Sabah to organize a workshop for hemophilia patients in Sabah.
In end of 2014, I was approached by a strong advocate of hemophilia who is also the former President of Hemophilia Society of Malaysia and former Vice President of World Federation of Hemophilia. He encouraged and guide me the way to initiate and set up a Hemophilia Society within my region.
So, in the year 2015, I was involved in advocacy in the form of Hemophilia Society of Malaysia Sabah Chapter because I believe in the power of action to create positive change. Advocacy allows me to use my voice and influence to address issues that matter deeply to me, such as supporting individuals with hemophilia.
By actively participating in advocacy efforts, I can contribute to raise awareness, influencing policies, and fostering a more inclusive and supportive society for those affected by this condition.
Through advocacy in action, I can make a tangible difference in the lives of individuals with hemophilia, helping to ensure they receive the care, understanding, and opportunities they deserve.
I managed to establish a strong network of stakeholders ie.Ministry of Health(Sabah), hospitals(throughout Sabah and Kuala Lumpur), to ensure that the society stays updated with the latest advancements in hemophilia treatment and care. Through strong networking, it facilitates collaboration among the healthcare providers, patients, caregivers, and policy makers. It also increases the society’s ability to access resources.
As a 2024 SSMF Scholarship recipient, I will make the Hemophilia Society stands as a beacon of strength and hope, transforming lives and reshaping the narrative surrounding this challenging condition.
Hola mi nombre es Patricia naranjo y soy mamá de Diego Blankevoort de 7 años quien tiene Hemofilia A severa soy portadora de hemofilia mi padre tenía hemofilia y cuando nació mi hijo nunca imaginé que el podría tener y así fue desde un año que Diego usa la profilaxis el se inyecta hoy en día 1000 de liofilizado y nos a echo la vida más fácil y para mí niño la vida normal estoy muy feliz por su tratamiento ya que si el Diego se pone mal nunca debe de faltar a su tratamiento siempre al pie de la letra vamos hoy en día yo aprendí a inyectarlo gracias al centro de hemofilia del Hospital Roberto del Río y asus profesionales en especial ala doctora Verónica Soto la mejor doctora que le tocó a mi hijo y así vamos viviendo día a día su enfermedad se puede vivir en armonía y tranquilidad.
I am a mom of four beautiful children, with one having moderate Hemophilia A (however, he bleeds as a severe). He is my second youngest and most defiantly the most wild out of my bunch. From 7.5 years ago, when we found out Elias has hemophilia shortly after birth, life has has it challenges but most importantly its brought us into an amazing community that I cannot be grateful to be apart of.
When Elias was first born, we knew pretty soon after birth, that something was not right. He bled, and bled, and bled for days. We later were finally transferred to Vanderbilt Children’s Hospital where we found that he had Hemophilia A. What a day that really was. From being exhausted from having a new baby, to finding out that he has a serious condition, it really took a toll on me, as his mom. From that day though, I knew that I had to become Elias’ expert of his body and his condition because I was not only a mom now, but his advocate as well.
Early on, things were okay and we treated as needed. He started walking, and we had to have a few infusions from him falling and bruising that just would not stop growing. He started talking, and we had multiple infusions from mouth bleeds from him biting his tongue. When he was 2, we spent Christmas Eve in the hospital from an ankle bleed that we assume he got from walking on gravel (but who really knows). A few months later he got another joint bleed but this time in his elbow that we concluded had to of been spontaneous. At this point, I knew I had to stand up for him and decided that we needed to start on prophy because I could not deal with my son being in so many pain and treating afterward. After much fighting with insurance, he was finally approved to start emicizumab.
Emicizumab has absolutely been life changing for us. While I had never limited Elias from doing fun boy things, like riding his bike, jumping on a trampoline, doing backflips off the couch, riding a dirt bike, you know all the “fun” things that kids like to do, emicizumab sorta gave a peace of mind as well. Literally 3 months after his elbow bleed, he ended up breaking his other arm while in a bouncy house, ONLY MY CHILD RIGHT? LOL. We infused as a precaution but I really believe that because he has emicizumab, his injury was not worse.
Elias is now 7.5 and is NOT a poster child of Hemophilia. I let him do all the fun things that he wants to do (for the most part anyways). I fully believe that if I do not let him learn his own limitations now and let him “live in a bubble” then things will only get worst as he gets older. He plays baseball and is aggressive in his position and I think its great! He does not let Hemophilia define his life and I don’t either. Our life may be a little different from others, we may have to do things a little differently, but as a mom of hemo hero, my mind now thinks differently too.
We have started bringing awareness to our local community as well as bringing it all the way to Washington D.C. Nobody knows if they simple just don’t know. It is our job to bring attention to the matter and bring the awareness because I too, was one of those who had no idea that the word “hemophilia” meant. I love this journey that we as a family are now embarking. Elias is learning to advocate for himself, his siblings are also aware and are able to bring awareness to who around them too. Hemophilia not only affects the one who has it, but the entire family as a whole. We must support, advocate, and deal with it together to come out stronger and better than ever. Hemophilia will never stop Elias, it just may try to slow him down, but we are there to support and push him, because it will never win; we will not let it!
Dear All,
My name is Phyo Khant Kyaw, and I am writing to share my journey as a severe Hemophiliac with Factor-IX deficiency from Myanmar.
In 1998, I was faced with the harsh reality of my condition when a simple injury to my gum led to a diagnosis that changed my life forever. At that time, diagnosing Factor deficiency in Myanmar was a challenge, and I had been on a journey over thousand blood transfusions.
Despite the countless transfusions, my knowledge of hemophilia remained limited. When I became a member of the Myanmar Hemophilia Patient Association (MHPA), I was able to connect with others facing similar challenges, and together, we shared knowledge, experiences, and support that empowered me to navigate my condition with greater confidence and understanding.
One of the most harrowing moments of my journey was experiencing an intracranial hemorrhage during my childhood. I was engulfed by fear, unable to speak, and unable to see the light . However, care and treatment provided by Pf. Aye Aye Khaing, I got recovery within two weeks.
Until 2016, the absence of Factor-IX treatment left, resulting in deformities in both knees and my left elbow. However, in 2017, with the introduction of Factor treatment, a new chapter of hope began.
I am immensely grateful to the World Federation of Hemophilia (WFH), whose saving my life and the lives of countless others affected by this condition. Through their initiatives and advocacy, individuals like myself have been given a chance at life, hope, and a brighter future.
In closing, I extend my deepest gratitude to Pf. Aye Aye Khaing, the Myanmar Hemophilia Patient Association (MHPA), and the World Federation of Hemophilia (WFH).
With heartfelt appreciation,
Phyo Khant Kyaw
Terapeuta Hemato-Onco formada para peques con Hemofilia sin conocer que la vida me preparaba para atender a mi propia familia. Oaxaca-México
This is my Journey of living with Haemophilia.
Pour toute question, veuillez contacter marcomm@wfh.org.
Français 