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Discover stories about how bleeding disorders have affected people and their loved ones.
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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
Then and Now of a Hemophilic
While living with Hemophilia-A severe is a full time contest and this was become more case-harden when someone like me lives in a remote and under-develop area of North West Pakistan. I opened my eyes when conditions were not favorable, means, no treatment availability for cure and unknowingness about Hemophilia. My mental growth and progress rendered during my childhood period. Life was almost a burden.
When I and my family came to know about this mysterious disorder, then I was kept restrict from certain activities like that of traditional sports in my Village. I was bitterly treated in my school as having the most absent student from school. This put further pressure on me. But the most tragic was the death of my father who was the lone supporter of our family. Also I was the eldest among the sibling. Now rescheduling life as a responsible person to treat myself and family was got more difficult.
The year 2015 was a game changer for me when for the first time I participated in a World Hemophilia Day event arranged by Hemophilia Patients Welfare Society – Peshawar Chapter. There I met with people who all have suffered with Hemophilia in one or other way. I took a breath of satisfaction when I heard almost same stories and like mindedness. I decided to shift to Peshawar city because of the availability of good quality treatment from Hemophilia Foundation – Pakistan [HFP] & World Federation of Hemophilia [WFH]. It brought more comfort when I was selected as Executive Board Member of Peshawar Chapter. I took upon the responsibility as a volunteer and sooner I used to take part in different local and national activities. Looking to my hard work and thirst to discover Hemophilia more, I was nominated as member of National Executive Council of HFP through voting. This brought more courage and enthusiasm that I can proceed in a much better way.
To diagnose and treat Hemophilia or related bleeding disorders, the management from government sector is too much necessary. The government should loop persons with hemophilia, their family and medical experts so that there may be easiness for patients. Early education & parents guidance is vital in developmental stages. Volunteerism is the best role player where besides oneself, others may be benefited. Also communities like that of Hemophilia has exceptional role to develop a skillful life.
Am Francis mbahati from Kenya hemophiliac. I lack factor 8 in my blood. I have been suffering experiencing all simptoms of this illness. This has made me so much unworthy in my life since am not able to compete with my fellow friends in games and also in manual work which requires full body power. In school I suffered a lot of humiliations since I was always ailing most of the time one could see leaping, swollen joints. This made me to be absent so many times during my schooling.I sat for K. C. S. E on 2014 where got mean grade of C-. Finally in2019 I was diagnosed and found that I suffering from hemophilia where I lack factor 8. So in case of any injury I have been going to my nearest hospital to be administered for factor 8.My humble request to who have knowledge about the pain that patients with hemophiliac and other blood disorders undergo is that all of my life time I have been visiting different healthcare centers. This made to have a passion of me becaming a healthy worker.till I have not been able to get the required amount of money to be admitted to Kenya medical and training college. So my humble request is that anyone who is interested, willing and able to assist am willing to accept their contribution since you will be transforming my life. Thank you
Holaaa¡
Mi Historia inicia desde los 6 meses de edad cuando fui diagnosticado con Hemofilia A Moderada, Soy Felipe Posada Bravo ya tengo 14 años vivo en Medellín, donde también me diagnosticaron wombilebran com deficiencia del factor 8, he batallado durante toda mi infancia y he podido aceptar que no es una enfermedad sino una condición, en la cual la he convertido en mi amiga , pues es la mejor forma de sobresalir Como HEROE en cada Hemorragia ,salí de hospitalización hace 2 semanas del Hospital San Vicente Fundación y continuo mi vida normal por que es lo más valioso que tengo y mientras halla vida hay ESPERANZA…..NO SE OLVIDEN QUE SOMOS NUESTROS PROPIOS HEROES ¡
Hola, mi nombre es Amin Esteban Gutierrez Aguilar de Bogota Colombia diagnosticado con hemofilia A severa.
Un saludo a todos esos guerreros que como yo, vamos luchando dia a dia.
My son Ted, has severe Hemo B with no family history. I am part of a group of parents who set up a charity called Local Families with Bleeding Disorders in and around London, UK, to support families by families. This year, for World Haemophilia Day we were All In Red by wearing red for #PEwithJoe, the UK online PT who is doing worldwide PE sessions, this allowed us to stay connected and engage in positive activity which keeps our bleeders strong too. We did some yoga with an amazing instructor in San Fran with the power of zoom. We held a competition to say #BleedersSayThanks to our National Health Service with the charity run by Alex Dowsett, called Little Bleeders, who is a UK Olympic Cyclist with Hemophilia, and we started our series of webinars for children on the day for our younger communities, where they were shown self infusing by one of our amazing community advocates who has established a career in cricket!! It’s been great to keep connected online and celebrate life with bleeding disorders!! Happy WHD!!
Je m’appelle NSAPU MVULA BASAULA François-Xavier Vinnie, suis hémophile de facteur VIII et j’ai aussi un grand frère comme moi. On était diagnostiqué malade depuis nos bas âges. Pour moi, cette maladie est comme toutes autres maladies, la seule différence qui existe entre elles c’est au niveau du traitement. J’ai passé une belle enfance, malgré l’absence des traitements qu’il fallait, je me disais que cette maladie ne fera pas en sorte que je puisse m’amuser comme tout autre enfant, j’étais vraiment un enfant heureux et épanouie. Après nos amusements mes amis rentraient chez-eux sans problèmes, mais moi avec les hématomes presque partout dans tous le corps. Ses derniers ne m’ont pas empêché de vivre heureux comme les êtres humains sains, au contraire me protégeaient même quand il s’agissait de faire les jeux brutaux, ils connaissaient mon état de santé. Même aujourd’hui étend grand suis toujours heureux, parce que cette maladie ne m’empêche pas de vivre, où bien de faire certaines activités comme les sujets sains.
On sait qu’elle existe et qu’elle est fatale si on ne se prend pas en charge au moment opportun.
Je rends grâce à Dieu, et à ma famille qui nous ont donnés l’amour qu’il fallait. Certes, quand on tombe malade les cœurs des gens sont debout.
Sa fait aujourd’hui presque 3ans que je suis suivi par le Dr LEDAGA, grâce à elle nous les hémophiles du Gabon nous pouvons acquérir les soins qu’il faut. C’est aussi grâce à cette dernière qui ne cesse de nous bousculer pour qu’un jour notre Association Gabonaise des Hémophiles puisse avoir une bonne prise en charge auprès des autorités compétentes pour nous les malades.
Je remercie encore la Fédération Mondiale de l’Hémophilie qui ne cesse de nous venir en aide à tout moment.
Being an Administrator and ensuring that the logistics for people living with hemophilia in Kenya is an amazing opportunity to serve the ever dynamic and also challenging job that I have been doing for the past 5 years. It has indeed changed my life as I serve to change their lives. It’s been humbling, tearful, joyful, and also fantastic to see that PLWH love each other, they speak as one and the global community does care about each other. I am honored to continue serving the Hemophilia community and also add value to their lives and they add value to mine. It gives me the hope and courage to wake up everyday and see a smile.
It has been a great pleasure to be part of this global community as a haematologist looking after kids with bleeding disorders in Sri Lanka.
Wishing you all a happy & healthy World Hemophilia Day !
Comencé desde hace 30 años a trabajar como voluntaria en la AVH , me di cuenta que mientras todos estuvieran bien , mi hijo también lo estaría , hay que seguir trabajando para darles mejor vida a todas las personas que viven con hemófilia y sus familias
A Journey of Life
Its not about Perfect. Its about effort and when you bring that effort every single day, that’s where transformation happens. That’s how change occurs.
I am Tahreem Habib currently doing BS Biochemistry from Quaid e Azam University Islamabad. I am patient of Bernard Soulier Syndrome; a hematologic disease related to impairment of platelets leading to formation of dysfunctional platelets.I am the elder and first child of family. I was diagnosed with this disease when I was 3 years old. As a rare bleeding disorder and no family history of any of the bleeding disorder my parents were not familiar about the underline cause when they experienced my nose bleeding, bruises. Having child with bleeding disorder made my parents more observant and careful.
When my parents first experienced my nose bleed and bruises they took me to PIMS Hospital which referred me to AFIP for tests which were not available there at that time. After diagnosis, I sought medication from PIMS hospital whenever I experienced any issue. Neither me nor my parents have nay idea abut organizations working for patients with bleeding disorders until we met Dr. Tahira Zafar as hematologist in the same hospital and I got registered in society that work for patients with bleeding disorders.
As a child with bleeding impairment I had to face a lot of problems in school and daily life. I had to be more careful whenever I did something so that I don’t get a wound or cut. I spent days and nights with my gums bleeding and treating myself to stop bleeding. I still remember when I lost my first baby tooth and had been bleeding for hours. These times were hardest when it happened in school or any other place. Everyone looked at you as in a way that its all your mistake. But still in all these circumstances I was an outstanding student of my class. I always stood first in my class with involvement in extra curricular activities. I secured more than 80% marks in my matric and intermediate with a clear distinction in my class. I am always grateful for my parents and my teachers for being a great support in my entire academic life.
“Life is not bed of roses” is the term which we used to hear and I realized this when I became severely ill in my fourth semester of graduation. My hemoglobin level dropped to 4 and I wasn’t able to do anything. That phase of my life was the most terrifying as I experienced death closely. It left a long lasting impression on my mind because I can’t got over that incidence. But I didn’t lose hope and moved forward. I continued motivated myself and my parents made efforts to keep my morale high at each step whenever I feel down. Now I am in my last semester of graduation and have high aims. I am also involved in many extra curricular activities, take part in different competitions and also part of different organizations .
I have high ambitions for my future and will try to do more for my country and patients with bleeding disorders. I want to make my parents proud and happy as my success is just because of them. I hope I will achieve my goals in near future.
Soy Francisco González
Mí historia inicia desde el año y 8 meses de edad, cuando fuí diagnosticado con Hemofilia A Leve, sin antecedentes de Hemofilia por parte de la familia de mi padre ni de mi madre, después de haber tenido complicaciones para detener un sangrado en la boca.
#HemoHacksMx
Si estás viviendo con este trastorno, es algo de lo que estar orgulloso, no avergonzado!
Hoy es uno de esos días en los que mi #hemofilia está tratando de sacar lo mejor de mi, hoy no pude moverme, tengo un #sangrado en mi #rodilla izquierda.
No haré mi rutina de ejercicios en los próximos días lo que me lleva a un estado tanto física como mentalmente.
En cuánto el sangrado seda y la inflamación disminuya, comenzaré de nuevo a realizar mis ejercicios. Seré más fuerte que mi condición y seguiré adelante.
Se que haya afuera hay toda una #comunidad de transtornos de coagulación y también mucha gente que tiene en su mente un #fantasma de miedo con respecto a hacer actividad física teniendo hemofilia o algúna otra coagulopatia.
La profilaxis no ayudará a reparar articulaciones que ya están lesionadas.
Sin embargo, disminuirá la frecuencia de las hemorragias, y puede reducir el avance de la enfermedad articular, y puede mejorar la calidad de vida.
El factor no es lo único importante para mantener tú salud; el movimiento es igual de significativo. Estar activo durante este tiempo en aislamiento es crucial para mantener una buena salud física y mental.
Tú puedes!
Solo quería recordárselo
World Hemophilia Day is the opportunity to renew the oath we all took to support and assist the global hemophilia community. For me, it has been an honor and a great pleasure to be part of this global community. I hope we continue the journey and to together celebrate more WHDs.
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.