English 
Discover stories about how bleeding disorders have affected people and their loved ones.
The content published on this site has been uploaded by third parties and is not representative of nor endorsed by the World Federation of Hemophilia.
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
السلام عليكم ورحمة الله وبركاته
أسعد الله أوقاتكم بكل خير
انا والد الأطفال غازي و ساري من مواليد السعودية وهم هيموفيليا B
ويعتبر المرض وراثي عن طريق الأم
ونعاني بشدة من توفر العلاج بالسعودية لأننا غير سعودين
واطمح بتوفر العلاج عن طريق الصليب الأحمر حول العالم بوظع حقيبة بها أفكار تساعد مريض الهيموفيليا ومن ضمن الحقيبة ساعة مثل ساعة آبل وبها أفكار ومعلومات عن حامل الساعة بتكنولوجيامتطورة ولدي أفكار أتمنى أن تتحقق ولو أستطيع الهجرة إلى الدول الأجنبية لفعلت لاني فلسطيني
Pédiatre exerçant depuis 20 ans, j’ai été confrontée à l’hémophilie pour la première fois il y a environ 6 ans.
En 2015, j’ai reçu un papa accompagnant ses deux garçons de 3 et 11 ans hémophiles A .Le plus grand avait été circoncis à l’âge d’un an, ce qui avait révélé la maladie devant le saignement important qui avait suivi l’acte. Le papa désirait réaliser la circoncision de son deuxième garçon et éviter le scénario vécu par le frère ainé.
A l’époque, je ne savais pas vraiment à qui l’adresser, alors je lui demandé de me laisser le temps de passer quelques coups de fils pour organiser cette intervention. Je me suis vite rendue compte qu’en absence de facteurs, une circoncision n’était pas possible . Je suis restée en contact avec la familles pour gérer les épisodes de saignement que l’on arrivait souvent à stabiliser par administration de dicynone et parfois plasma frais congelé…
En 2017, le soulagement est venu par une hématologue du pays ( devenue médecin référent) en collaboration avec la fédération mondiale de l’hémophilie ce qui a permis d’améliorer la prise en charge des patients hémophiles grâce à la disponibilisation des facteurs au moins pour gérer les accidents aigus.
Depuis lors mon petit patient a été circoncis après administration de facteur . Suites simples.
Life of a boy suffering from hemophilia.
I’m Feroz,haemophilia sufferer but my life never stops. Let me present to you the little idea of my life.
Born in 15-03-1997. The current age is 24 years. At the age of nine months, at the time of hammering, he began to become slightly black in various places of the body, including knee, cunnies. Bleeding out of blood After taking three bags of blood, my blood stopped stopping. The doctor said that I have hemophilia.
Doctors also said that the cause of the disease is hereditary and the symptoms are where the blood will not stop when cut. Where there is an injury, the swelling will bleed inside the body so you have to be very careful. But they dif not say that there is any treatment for injection, plasma or therapy. Then many days, months, years go, we went to different types of doctors, there is no profit but loss.
At the age of 7, the left knee suffered a lot of injuries, then my left knee began to swell again and again at one point i have to use stick to continue my walk away. Stick around for about 6/7 years but at 2014 I will be in ninth grade one day my mother’s cousin will be my uncle. He will show me the homeopathic doctor. He used to see me for a long time and said that it was really good if i came before but it is still not too late. Without saying another thing, after I got hit by Ben, I could not walk better, but after his treatment he told me to take a stick with my armpits and then I started to walk slowly, knowing that before a year I learned to ride a bike. I didn’t even dream.I bought a bikeint 2015 and went to college every day for 5 km, and thus, when I started taking the HSC exam in my body was very impure from the second test day.
The homeopathic doctor’s medicine no longer working,but that way I passed the HSC exam and then I was admitted to Hons.
You know, when I went to infuse blood due to blood loss in the body, Doctor told me to go to Dhaka PG hospital. He also said that there were some injections that cost Tk 6/7 thousand they could have paid 4-5 or more but then my family did not have the ability to afford Tk 40-50 thousand taka.
What would you think if I heard one thing, I still knew in factor injection, plasma, therapy in 2017, but I didn’t try so well I was good at treating that homeopathy doctor. However, when his medication did not work after the HSC examination, I went to a doctor on December 24,2017 he told me the first thing and then I knew everything from the internet in just two days.
In 2018,I went to Dhaka, I was admitted to the hemophilia society, where I took a factor for the first time. Then i took some therapy and i got very good feedback, then after 10days i came back Dinajpur.
Society has played a big role in my recovery and they helped me many times with factor injections, even if they have a factor.
After coming from the Society, I followed them and since then I have been very good at the mercy of Allah.
Now i am Hons 3rd year student, I am also doing a job around for more than 3 years.
You know, my village now speaks a lot about me. How I was and how I am now. No one sees me and believes that I have such a big deficit.
There was a lot of thing to say but already its more.
You will never lose the confidence I have in asking for every hemophilia patient. Because your first motivator is you.In the world who have been more successful than you with their deficit and you should learn from this. There are many people with your disease and those who do not have hands, but they are leading a life. Did you know that a hemophilia patient won a silver medal in the Olympic bicycle race?
Greetings to everyone. Hope that the person who is reading my story is healthy and safe.
Myself Suvo Rahman from Jessore,Bangladesh. I am going to share a story which is occured few days ago. One day, in noon I suddenly started to feel stomach ache. My family thought it was just a normal pain. But with the passage of time the pain started to increase so extremely that i never experienced. Moreover I started to feel fever along with the vomiting. On the next day, i rushed to the hospital.By observing my condition, Doctor told us that it was a kidney infection. I tried to make them understand that i am a hemophilia patient and it is somehow related to any sort of bleeding in my stomach. But Doctor didn’t pay heed to me. They infused sleeping injection in me. They were giving me treatment on the basis of kidney infection but situation didn’t improve. That time the pain was so extreme that words will fail to explain it. i started to feel that i am going towards the end. But later on, observing my worst situation, doctor considered my word and gave me one bag fresh blood. In next three days they gave me three bag plasma on daily basis. Then I started to recover from that condition.
Thank you for patiently reading my story.
CC salut je m’appelle Fabrice IKOU BIYOUKOU je suis infirmier au Centre Hospitalier Universitaire de Libreville (CHUL). je m’investis dans l’hémophilie et sur les personnes atteintes de cette pathologie depuis déjà deux ans ( 2 ans ) auprès du Docteur Léonie Esther LEDAGA Médecin hématologue grâce à qui je me suis lancé et prends en charge quotidiennement ces malades dans le but de les aider à améliorer leur qualité de vie.
j’exhorte donc mes frères et sœurs gabonais à faire comme moi, soutenir les hémophiles par le canal de l’association gabonaise d’hémophilie (AGH) pour mieux connaitre cette maladie
Hi, this is Remo from Pondicherry, India doing my final year B Com, suffering from hemophilia A. As a child i never cared about it until it affected my joints and i had to skip classes at my school and couldn’t participate in any sports.
The factor availability was restricted in my area and i had been bed ridden for more than 6 months during which time i felt so lonely. I never left my hometown due to this, but slowly due to continuous support from the chapters, regular exercises and improved medical facilities now I’m quite fit. Now I’m doing my degree in a college far away from my hometown and my factor intake has reduced considerably.
I also volunteer in my chapter as youth secretary and as a facilitator in National youth workshops.
Soy el Dr. Ricardo Villegas Medico Hematologo de la ciudad de Cochabamba Bolivia , actualmente a cargo de la atencion de los pacientes hemofilicos de mi region, y dirigiendo el Comite de atencion del Hemofilico en Cochabamba, que esta conformado por profesionales afines a la atencion de nuestros pacientes. Actualmente nos encontramos abocados a la elaboracion de guias y tripticos .La capacitacion de profesionales, pacientes y familiares es lo principal.
Somos Juan Santiago y Augusto de Udaeta, de 19 y 17 años, argentinos, ambos somos hemofílicos severos Tipo A. Vivimos en la ciudad de La Plata, provincia de Buenos Aires, República Argentina.
A mí, Juan Santiago, me diagnosticaron la enfermedad a los 10 días de haber nacido. En el caso de mi hermano, mis padres sabían que si era varón sabían que existían grandes posibilidades de que fuera también hemofílico. Al principio fue difícil, fuimos siempre muy inquietos y Papá y Mamá muchas veces tenían que salir corriendo con alguno de nosotros para el Hospital de niños “Sor María Ludovica de La Plata”, pero a medida que creciendo todo se hizo más fácil. Mi Mamá, nos aplicaba el FACTOR VIII, tres veces por semana en nuestra casa. Ahora me aplico sólo, pero mi hermano se resiste a aplicarse y le pide a mamá que lo haga. Estoy cursando en la Universidad Nacional de La Plata, Facultad de las Artes, la carrera de Diseño Multimedial. Mi hermano, Augusto, está en sexto año de la secundaria. Tuvimos nuestras idas y vueltas con la enfermedad, especialmente cuando sentíamos que nos decían a alguna cuestión que “No”, como por ejemplo, cuando quise hacer Taekwondo o mi hermano quería dedicarse de lleno al tenis. Pero lo superamos en familia y seguimos adelante, con el apoyo constante de nuestro médico de cabecera, el Dr. Oscar Torres, que nos acompaña desde que éramos muy chiquitos.
A veces da mucha bronca lo limitante que puede ser la enfermedad, pero, los desafíos son enormes y siempre los enfrentamos. Esperamos que cada día exista algún avance científico que nos permita aplicarnos menos veces el Factor o que sea mucho más sencilla la aplicación, o mucho más espaciada en el tiempo. Sabemos lo grave de nuestra enfermedad, pero seguimos incansablemente adelante.
Soy portadora y madre de un niño con hemofilia a severa y autismo y albinismo a él cual de dieron un pronóstico de vida muy corto por ser venezolanos y con su múltiple patologías y por yo averlo dado a luz con 14 años y fuy madre soltera el hecho de que mi hijo naciera con todo esto me motivo a aprender mucho de las diferentes patologías y de como poder ser madre soltera, no miento fue muy dificil por que el se auto agresiva y no hablaba y no expresaba lo que sentía esto es duro para cualquier madre pero gracias a Dios y su amor infinito que me da fuerzas para luchar por mis hijos pude seguir Luchando y aprendiendo cada día mi hijo comenzó a caminar a los 16 meses y se caia mucho esto me llevó a crean un gorro protector de goma flex para que no se golpeara y a colocarle especie de parches de este mismo material en su ropa en la parte de las rodillas lo cual lo ayudó mucho a amortiguar las caídas ya hoy mi hijo tiene 13 años por la grave situación de nuestro país de origen tuvimos que migrar a Ecuador estuvo casi 2 años sin ningún tipo de tratamiento pero gracias a Dios ya logramos que por el sistema de salud público entrará. En profilaxis por el hospital pediatrico baca Ortiz con la hematólogo claudia ochoa que es de gran ayuda y orientación para todas las evaluaciones médicas que mi hijo ha necesitado ya que por el autimos no a tocado luchar muy fuerte contra el bullying en la escuela y la incomprensión de algunos docentes ante las condiciones que tiene mi hijo pero no por esto nos damos por vencidos seguimos luchando de la mano de Dios para poder superar todas las metas y seguir para ayudar a michos niños y madres que tengan la misma condición y que por poca o ninguna información no saben como manejarse esa es mi historia como madre adolescente de un niño con hemofilia a severa, autismo y albinismo que no para de soñar y se llama Rafael Agustin Montoya Jurgensen y es un genio tecnológico como el mismo lo dice
hola somos de argentina , padecemos deficiencia congenita de factor VII mi pequeña y yo , Rita y Martina somos … ella usa profilaxis dos veces por semana debido a sus sangrados espontaneos , presento hemartosis en su rodilla izquierda repetitivamente y diferentes sangrados desde que esta en profilaxis su vida mejoro bastante, adaptamos todo a sus necesidades, ahora esta mucho mejor y desde aca tratamos siempre de informarnos de todo lo nuevo que haya sobre nuestra patologia… ella tiene 15 años y esperamos algun dia pueda avanzar mas todo para la cura… tenes estudios geneticos que nos ayudan a entender mejor la patologia ya que tambien presenta una deficiencia en adhesion plaquetaria, nosotros como padres solemos estar presentes y concientizar a la poblacion de esta patologia que se da 1 en 500-000 personas, damos charlas en los colegios y en la actividades en las que puede participar martina, que por lo general las adaptamos… desde argentina mar del plata vamos a estar concientizando desde redes sociales en el dia mundial de la hemofilia… gracias y besos para toda la comunidad..
An expression of thanks
September 11, 1977, I (Ashutosh Sharma) was born in the capital of India, Delhi, there was a wave of greetings in my house because after five years of an elder sister a boy was born.
In those days, birth of a boy was given great importance in India, his family’s dreams were associated with his birth that he would grow up and decorate our family’s future but destiny had a different plan for me.
When I was 9 months old, I fell from the bed and got an injury on my forehead. Post this, one night I found my head swollen like I had a blue ball attached to my forehead which used to hurt a lot. My parents consulted many doctors and they gave me medicine but it seemed to be of no use back then. The doctor decided to do an operation of that blue swelling and when he did the puncture in my forehead, he saw that it was filled with blood from inside. He changed his decision and prescribed me pain relief medicine and gave it to my mother and told her to keep me at home and let him rest, it will be cured on its own. After a few months, that wound started to heal and I started living with this unknown disease.
As time passed the condition worsened. It started to bleed from my mouth probably the gums while I was sleeping at night. It filled my mouth with blood and all my clothes and bedsheet were covered with blood. By morning my mouth was completely closed with blood. My mother slowly removed the blood clots from my mouth with wet cotton and after cleaning the clots I was able to open my mouth to eat something. A few minutes later there was a series of bleeding, sometimes severe pain in my elbow or soreness in the knee, and the surprising part was that we were completely unaware about what was really causing it.
When I started going to school my mother would take me but after a few days again the pain and swelling started in my arms and legs and I was no longer able to go to school. It used to happen many times with me, every kind of medicine was administered but everything remained ineffective and there was no improvement in my condition. When I was 9 years old someone told us that All India Institution of Medical Science (AIIMS) in New Delhi is a very big hospital and you should go there for his check-up. When I went there they got my blood tested and a doctor who had taken the training of Haemophilia diagnosis from Italy examined me and told us about the disease named Haemophilia-B. He said that there was no treatment in medical science for haemophilia and it could only be prevented by plasma and blood transfusions. At that time AIDS was very widespread in the world due to blood transfusion and my parents decided not to transfuse blood in due to the ongoing condition. Doctor told us that I had to avoid all kinds of injuries. After the advice given by the doctor, my father lost confidence in me and agreed to keep me at home for the rest of my life, but my mother did not lose her courage and continued my studies by appointing a tutor and my mother kept taking me to school from time to time to get the annual examination. My school life continued with pain and whenever I had a joint pain I could not sleep all night and kept screaming with pain. I kept crying all day and night in pain and made the situation so difficult for me to move ahead. When I was 16-17 years old, I was playing with my friends when I mistakenly hit my head against the wall and it caused deep internal bleeding in my brain. I was brought to Delhi from Jind (Haryana) where a friend of my maternal uncle had heard the name of this disease and informed us about the Haemophilia Society, Delhi and there for the first time in my life I got the life-saving drug called Factor 9 which was injected in my veins and that factor was given to me for 10 to 15 days. At that time the cost of these injections was high and it was not easy to afford for the middle class, but to save my life my father sold his precious land and my life was saved. Due to brain haemorrhage half of my body was paralyzed and it took me one year to become normal.
After that day whenever I had bleeding in my arms, legs or shoulders my father used to buy factors from Delhi Haemophilia Society and got me injected. Sometimes we were unable to buy it due to lack of money and I had to struggle again with unbearable pain but every moment in this fight my mother was with me as a boon which is why it is rightly said “God cannot be everywhere so he created mothers”.
Now I had to move from my city to Delhi in agony again and again for factor infusion whereby my parents decided to permanently shift to Delhi after seeing my illness. After 1 year I started my own business of clothes in a famous market in Delhi. My business went very well but one evening while I was returning home from the shop I met with an accident and my hands got fractured and I suffered a lot of injuries. I had to purchase factors in bulk and was quarantined at home for 8 months. My new business and my hope both shattered due to my health issues.
We left Delhi sometime after and came back to my ancestral home, Jind (Haryana). In 2000 my mother became a municipal councillor of our district and I joined her in social work. After a few years suddenly I got another brain haemorrhage and got admitted at the Lok Nayak Jayaprakash Hospital in Delhi. From thereon I started getting free factors from the government hospital and they injected Factor 9 for several days to improve my injuries. After a lot of effort my life was saved once again,
In 2005 I got married to Jyoti, her family was told all about my illness and Jyoti knew everything and agreed to give her consent for marriage.
In 2006, I was not aware of the investigation of haemophilia in the womb until I was blessed with a girl. My whole family was engaged in celebrating the happiness of my new-born child. Everything was going well in my life and then one day I had a severe pain in my head and began to vomit. After a CT scan we found out that I had suffered from brain haemorrhage for the third time and then the long and painful process. I recovered from it for the third time but my whole family had to bear the mental depression at that time. After a few months, life became normal again and I kept myself busy with my daughter and family, till then my both hands, knees and right hip had worsened by 70 to 80% due to repetitive episodes of internal bleeding. My wife took really good care of me and used to suffer with me though day and night. She encouraged and prepared me to face the challenges of this life. After marriage my mother was able to take some rest from household work otherwise it was becoming very difficult for her because her health was also deteriorating.
In 2010 we had another girl and now I used to do more work to live my livelihood and kept myself busy but the pain returned after sometime and there was bleeding with terrible pain and my whole work and efforts went in vain.
One day in 2014 I got the idea that now I had to do something for other haemophilic patients who were like me so that the pain that I suffered in my life should not be experienced by them. During that time the factor 8 and 9 were unavailable at our local hospitals and anybody who had an episode of bleeding had to travel all the way to Delhi. I started trying to solve this problem with the help of God and my family, I found all the patients of my district who were like me and started a movement in which me and all my colleagues protested to get factors in our district hospital by writing a demand letter to District and State administration of Health Department. With hard work and efforts we got the success and were successful to avail the factors in our district hospitals. Though the factors were availed but the regular supply stayed affected and the factors were not inventoried but always fell short at the time of need. In 2017 we formed our own Haemophilia Society, Jind in which I was elected as the President with the unanimous consensus and then we succeeded in getting affiliation of our registered society from Haemophilia Federation India, New Delhi. Now in our HTC we are getting the supply of humanitarian product time to time through HFI recommendation from World Haemophilia Federation, Canada. Due to this today our district and other adjoining districts haemophilic patients are getting the benefit of this directly, now they and their family are feeling relieved.
Today the scenario has completely changed with the help of WHF and a new hope is clearly visible in our lives.
Thanksgiving
Ashutosh Sharma,
ashutosh@thesharma.com
Haemophilia Society, Jind.
Jind@hemophilia.in
Affiliated to HFI New Delhi, India
Hi
I am Maxine Stander from Kimberley, South Africa. I am a 24 years old and I was diagnosed with Factor XIII deficiency when I was about 1 years old. I am the younger of two daughters and I am the only one that has been diagnosed with Haemophila. Although I have been aware of my diagnosed for basically all my life, I have only recently come to terms with my diagnosis and have undertaken to raise more awareness in my community by sharing my experience and educating with others.
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
If you have any questions, please contact marcomm@wfh.org.