My name is Moline and I live with my family in Nairobi, Kenya. I am an Ambassador for MyGirlsBlood.

Nairobi is a very beautiful city with tall buildings including Kenya’s Presidential and Parliament offices. Tourists like the city of Mombasa better, because it is by the Indian Ocean; the port city of Kisumu is on the banks of Lake Victoria and the views are very beautiful.

Nairobi city has more people than any other city in Kenya. Many people work in Nairobi. The people, who earn more money, live in lovely areas and comfortable homes. Those people who earn very little money live in slums. The seven members of my family, including my mum, my dad my four brothers, my little sister and me, live in a single room. The room is not that large, but we manage. It has our beds, a few seats and a place where we can cook and eat our food. The food I like most is chapatti, made using wheat flour with chicken. The bathroom and toilet is outside and we share it with other neighbors.

I was born in 1984, but I did not find out that I had von Willebrand disease until I was16 years of age. Of course I had had serious bleeding episodes before that, and even one at my secondary school when I nearly died. I wasn’t always taken to the hospital, when I had bleeding.

I had a relative who said I was bewitched and tried to treat me with herbal medicine. It didn’t work. Not all of my family members believed that I was bewitched. Everybody had an opinion. Some thought I played too much.

When I was 5, I had a nosebleed that took 6 hours to stop. Everybody in our family was worried. They used cold water to reduce the bleeding but after a few minutes it would start again. My mum took me to a clinic where they told her that nosebleeds were normal for some children and that when I grew older it would stop. They told my mother to put cotton wool swab with liquid paraffin in my nose and use clothes for a cold-water compress on my head and neck.

At school, children would avoid including me in their games because they feared I could start bleeding. Teachers would remind me to avoid anything that could cause bleeding because whenever I bled, I would have to stay home for two days or more until I was better.

My secondary school was a boarding school and the teachers were always asking what my illness was and how it was treated. When I had a bleed I was taken to the nearest hospital and sometimes home, so I was in and out of school until I finished.

My condition was finally diagnosed when my younger brother, Javan, also started experiencing bleeding problems. When he was in the hospital he was diagnosed and we learned then that my father and I had von Willebrand disease too. My mother was really wondering how we would cope with paying hospital bills every month.

Once when my brother was in the national hospital, my mum met a woman named Maureen whose son had haemophilia. Her son had died because of lack of quick attendance by the doctors in the hospital. Maureen talked to my mum and said she wanted to help. Maureen started an organization to help those living with haemophilia and their families. The organization is called Jose Memorial Haemophilia Society of Kenya (JMHSK). My family was invited to attend the first meeting.

The day JMHSK was launched was the first time I knew I was not the only lady suffering from a bleeding disorder. I met over 20 girls and women that day. I made friends with three, two who were sisters; we shared our stories and agreed to follow up with each other about our problems. Sharing our stories encouraged us and we thank God that we have learned about our problem and know how we can handle it.

At the meeting of the JMHSK, I also met Laurie Kelley who founded LA Kelley Communications in 1990 and Save One Life. Laurie helped members of JMHSK to get clotting factor and gave us assistance so we can attend our haemophilia clinics.

Since that first meeting of JMHSK, I have met 16 girls and women with haemophilia through the MyGirlsBlood campaign that lasted from the month of January to March in Kenya. I have met some women who have no knowledge of their bleeding problem, some believe it can be solved with herbal medicine or spiritual intervention; others are ignorant that they have a problem. Some women I have helped have agreed to seek medical attention for the first time.

I believe it is vital to be involved. I volunteer in any activity that will help women to know about haemophilia, like trainings, counseling sessions, having campaigns and seminars in Kenya. In my country many are suffering because they do not have the knowledge they need. Most of all, I wish that haemophilia clinics could be opened in Kenya so that all the services people with bleeding disorders could be together and these services could be made available to people who do not have the funds because they are poor.

I would like to teach others and help them to learn about haemophilia and how to manage it. Acceptance comes first. It helps people to cope and be open to learning. It leads to a better life. My dream is to prevent people from dying because they are ignorant or do not have the money to afford the medical care they need.

This is why I am an Ambassador for MyGirlsBlood.Infact it was a great opportunity since MyGirlsBlood helped me attend the 2016 world hemophilia congress which i gained more knowledge on how to deal with my condition and hemophilia at large.
Currently creating women bleed too awareness in Kenya.

My name is Kathleen and I live in Michigan in the US. I was married to a man with hemophilia A back in the 1980s when HIV was in the blood supply. Nobody knew that this was such a big problem for people with bleeding disorders and their families. I learned this lesson in the most difficult way. My husband and I tested HIV positive in 1984, just after our daughter was born. Although she was born a carrier of hemophilia, she remained free from HIV. This is when I became an activist for awareness and education for both HIV and bleeding disorders. I got involved on the board of directors for the National Hemophilia Foundation and also served on NAPWA, the National Association of People With AIDS. During President Clinton’s administration I served on his HIV/AIDS Advisory Council for 5 years. My husband died when my daughter was only 8 years old and I raised her as a single parent. When she reached puberty and had many bleeding problems, further research showed that she had another rare type of bleeding disorder called PAI 1. I felt I had to do something more to educate the larger population about these two health issues. In 1999 I started the Stitches Doll Project (www.stitchesdollproject.org) for women to tell their stories in order to heal themselves and educate others. This is my life’s work. We can and must be messengers to everyone else. This community is my family and I will continue to serve.

My name is Lauren. I’m 25 years old and, despite bleeding excessively, carrying the gene, and receiving treatment for mild Haemophilia A, I still do not have a current official diagnosis recorded. Nothing other than ‘symptomatic carrier’. I only found out I was a carrier about 4 years ago. My little brother has severe Haemophilia A and was diagnosed at 11 months old. We were all tested upon his diagnosis and were all found, as far back as my grandmother on my mother’s side, to carry the same genetic marker but not the ‘common’ haemophilia one. Getting that diagnosis that we did, in fact, carry the gene confirmed so many things for me. It validated years of heavier than normal periods with no clear gynaecological explanation, constant nose and gum bleeds, huge blood loss after surgeries and plenty of unexplained bruises. I felt this was my time to get the help I needed. It’s taken many years, and a hell of a lot of fight, but I’ve finally received the treatment I need to allow me to achieve a quality of life close to those around me who do not bleed. This diagnosis has connected me to a whole family across the world that I never knew existed; women just like myself struggling to get their issues recognised, fighting for fair and equal medical treatment, and for that I am eternally grateful. I’m one of the lucky ones. It is my dream that one day, women all over the world will have access to investigation, diagnosis and treatment without question or prejudice. But for this to happen, we need to continue to educate those who do not know, or do not understand. We need to continue to speak, to shout our message until it is heard. We need to keep talking, keep educating, keep fighting. One voice may not be loud, may not make a difference but together, we will be a resounding, game changing roar and I can’t wait to hear it. My name is Lauren. I’m 25 years old with Mild Haemophilia A. Hear My Voice.

I was diagnosed with VWD type 1 (no sub-classification, we don’t use those in Australia – yet) just before my 17th birthday, but struggled for years both before and after with very heavy menstrual bleeding, GI bleeds, nose bleeds, regular serious bruising, as well as what I now believe were undiagnosed and untreated micro and mild joint bleeds. It has been through connecting with the community (8 years after my diagnosis) that I’ve been able to educate both myself and my doctor on what can happen with type 1s and what bleeds I do get. One of the most exciting and challenging things I’ve done since becoming an active member of the community 5 years ago is being a loud and proud advocate for patients (particularly women and girls) and a blogger over at www.mymissingfactor.com. Sharing my personal and medical history with others can be scary, but every time I connect with someone both inside and out of our extended international family that needs to hear what I have to share.

This World Haemophilia Day (and every day after!) I encourage all women with a diagnosis or bleeding symptoms to continue to advocate for themselves in medical, social, professional and any other situation they might find themselves in. You know yourself and your body better than anyone else ever will, so you are the best person to advocate for what is best for you.

I was born in 1949 and very lucky to see one of the few hematologist in the world who could diagnose my rare bleeding disorder. I have congenital afibrinogenemia or no Factor I. By the age of ten, I was an expert in bleeding disorders. Often I found myself teaching doctors or nurses that girls could have hemophilia too. I believe that education is a key to success. In my 68 years of life I have too many stories to tell here. Meeting other people who have a bleeding disorder has enriched my life, given me courage, and widened my understanding. Thank you to WFH for helping keep us informed, for giving us the opportunity to share our stories with each other, and for recognizing women and girls with bleeding disorders.

I’m Raebecca. I’m 17. I was diagnosed with severe type three von Willebrands Disease when I was about six months old. I was the very first to be diagnosed, but my parents and siblings also have it. I struggle with joint and mouth bleeds. I found out I had arthritic tissue in my knee when I was ten. I’ve had 2 what I consider to be near death experiences. I struggle sometimes, but I fully believe my disorder had made me a harder worker and a stronger person. It has pushed me to raise awareness and pushed me towards a career path I’m passionate about.

I’m not going to talk about Hemophilia in the World Hemophilia Day, because it is ordinary for other people doing that. I want to do something different, something like a related story and gratefulness.
Let’s start with story part. I was born with Hemophilia without inheritance. It means I got this disorder gift from nowhere just by a chance that’s lower than winning lottery. However, Hemophilia brought us no joy nor pride, but sorrow and fear. It is my own misfortune, but since I was a kid, it has been a big worry for my family, especially my mother. She has been worried about my disorder really long ago before I knew what worrying is.
My mother was there when the pain tortured me at nights. Nights, not night. More than ten years ago, when Vietnamese people don’t know what clotting factors are, cryoprecipitate was the only chance for us, people with Hemophilia, to stop bleed and pain. But the fact is we didn’t have enough cryoprecipitate to completely solve even a joint bleed. Therefore, pain follows me to the nights. I couldn’t sleep, I couldn’t rest, I couldn’t even move because every single movement could hurt me extremely bad. Someone told me “The pain you suffer from Hemophilia is something no one can share”, they’re right and wrong. My mother couldn’t take the pain for me but she shared those dark moments with me. She stayed awake beside andgently rubbed my swollen joints. Now I know rubbing is theoretically bad because it makes the bleed worse by speeding up bloodflow, but at that time, her light rubbing helped me a lot. My pain was reduced slightly, enough for me to take some little nap. Thanks to her, I could sleep about five times a night, ten minutes each, give or take. Those ten-minute-napsmeans so much for a kid who could do nothing but squeezing his own limbs in pain, crying and staying awake the whole night, and few nights after, until the bleed stopped.
The pain caused by Hemophilia is really unique that no words can truly describe. I have grown up, so have the pain. I don’t yell or shout anymore, because I’m an adult, but I still cry silently and helplessly when deep pain visits. Other adults patients feel the same way as I do about deep pain, they can’t help either. Hemophilia’s superpower is to make an adult cry like a baby.It’s the truth thatanyone with severe Hemophilia who has experienced all the pain without treatment wouldunderstand. My mother is not with Hemophilia but she understands it completely, because she has witnessed her son, who is about 0.04% active factor while bleeding, writhing in agony for years.
Therefore, my mother cares about me so much, sometimes she overcares, and I understand why. There are times I feel troublesome and awkward, however I still acknowledge and appreciate. She drove me school, she drove me hospital, she brought me from places to places in search of someone or somethingthat can cure me. She spoonfed me when my arms were immobilized hurt, she rised my leg when my knee was terribly swollen. She is the one brings me lunch regularly when I stay for long treatment. She cried when I cried.When I went to secondary school and accidently got hurt, my mother carried me on her back many times to the motor; my father did it, too, but he is a strong and tall man. Could you imagine a woman had to carry her son who was taller than her, on her back? Do you like it? I do not. She said to me, “No matter what, my knees are stronger than yours”, and forbid me from climbing down. Since I was a highschooler, clotting factors became common and I can handle the pain on my own most of the time it happens. Though, sometimes symtomps are still out of control, I silently cried a lot at night, and my mother still knows somehow. She came to my room, rubbed my limbs gently like old days and decided to stay but I refused so that she can have her sleep. I can’t let her stay awake with me whole night anymore.
Thanks to my mother, I can steadily live with my Hemophilia.My mother never leaves me despite the fact that some parents abandoned their Hemophilia children. You may wonder why I jump to gratefulness part while we’re in story part. Because this story never ends, it’s being continued everyday, and I want to say thanks to my mother in the World Hemophilia Day, with no delay.
To the best woman in my life: Thank you so much and love you, mom.

Being the 4th child in a family of 5 children, I grew up knowing my older brother was different to other boys. Mum never let him play “rough” games, and there were the frequent trips to hospital. In the 60’s the only treatment was blood transfusions, which meant a day or over night in the hospital for my brother. In the mid 70’s they developed a test for females of families with a history of Heamophilia to detect the “markers” for the affected gene. My older sister was working at the RCH (Royal Childrens Hospital)at the time, and heard about the test. I was in my teens and thought it would be good to know. Had the test, though it was in the early stages of development, it showed I could be a carrier. When I started dating, and later married, my husband and I had many discussions about the chances of having a boy with Heamophilia, and decided we would deal with what ever we were blessed with. In 1983 I found we were pregnant. All went well through the pregnancy, and on December 2nd, after a long labour, we were blessed with a baby boy. I insisted he be tested, and after some discussion with a pediatrician, they did the blood test and told us he had Heamophilia. Life was pretty normal for the first 8 months, well as normal for a couple with a new born can be. We decided to visit my parents who lived in Footscray, Melbourne. Being that we lived in Colac, Victoria, it was a 2 hour drive. When we arrived at my parents, getting bub out of the car seat, he started to cry, not knowing why, I just thought he had a wet nappy, so I started to changed him. As I was moving his left leg, he cried louder. My mum said it wasn’t good, and we should take him to RCH knowing my brother had Heamophilia, I didn’t argue. We went to emergency and told the about my brother, and my test results, and my son’s results, and what was happening to my son. They checked him over, and contacted a member of the Heamotolgy unit. My son had his first bleed, in the hip joint. Sitting in the car seat for so long, had put stress on the joint and started a bleed. He was treated, with Factor VIII, admitted to the Heamotolgy ward for observation and any further treatment as needed. The next day we were introduced to Prof. Henry Ekert, and his staff. They went through all the information on Heamophilia and all the new advances in the treatment and care of a boy with the disorder. The one piece of advice I have always remembered from Prof. Ekert was my son was a boy with a bleeding disorder, let him be a boy and don’t wrap him in “cotton wool”. That was the start of many visits to the RCH for treatments, check ups, and information sessions. We moved to Sunshine to be closer to the hospital, after divorcing my husband. Long story, short . . I remarried, and along came son number 2 . . .2 for 2 . . .he has it as well . . .more trips to RCH . . for a a while I was attending the hospital, for one reason or another, aprox. once a fortnight. But as they grew up, and learnt how to look after themselves, trips to the hospital became less frequent. And now they are both fine, healthy young men. The oldest(33) got married last year, and lives in Canberra. No grandchildren yet, but hoping soon. The other son(25) is not sure what he wants to do. And just recently we have found out their 22 year old sister, my daughter, is, also a carrier. As we have seen in the past 50 + years, research has given our boys better and safer treatments, detection of the “carrier” gene, and who knows what the future will bring.

My name is Jacqui and I have von Willebrands type 1. I was diagnosed about 12 years ago when I lived in the UK. A friend and I capsized in a canoe. About an hour later we stopped for lunch and as I stood up to put on my jumper I heard a huge number of involuntary gasps from those in the canoes behind me. I had bruised very badly all down my legs and my friend had minimal bruising. After that I went to see the doctor and insisted he run some blood tests to find out what caused this level of bruising. My results indicated a clotting issue and I was referred to the haemotology department at my local hospital. I struggled for adequate care and a diagnosis for some time, as the Haemotoligists specialised in blood cancers or haemophilia. I was told once by a Specialist that I didn’t have VWD, I was just a fat and short woman and that’s why I bleed abnormally. Sadly I was alone on that consult and no one else witnessed him saying that to me. As a result of this lack of care I went through five midwives and had the on call Haemotologist called out during labour to have my son. She was appalled that my notes said that due to me having VWD type 1 I needed no additional care for me or for my baby. I ended up having an emergency c-section after treatment with the tranexamic acid I’d brought into the hospital myself. Afterwards a new Haemotologist joined the local team and my care was vastly improved. I was re-tested and my VWD type 1 diagnosis confirmed. I was tested for DDAVP use, given Hepatitis B vaccinationsn and added to the national register of bleeders in the U.K. This register is useful in itself, but also helps to plan how much plasma store is needed. I moved to Australia almost 5 years ago and have only recently got a referral to a Haemotologist. My GP kept insisting that I didn’t need to be under the care of a treatment centre. One of the things that made me fight for the referral was reading an article written by another woman with the same condition; Chloe Christos. Through Chloe I have made contact with hundreds of bleeders around the world and learnt so much about bleeding conditions and treatments. I like to say that I had sought help before, I had gone to the doctor at 19 to discuss my very heavy bleeding during my periods and been told that it wouldn’t be looked at till I decided to have children. I am now 44 and have endured half a lifetime of inadequate care related to my bleeding condition. I love to say I was an exception, but I’m not. I regularly hear from women who’ve had similar experiences. Hear my voice! I will be fighting and advocating for proper treatment for me and others.

I had extreme nosebleeds (gushing, 2 hours long, etc) throughout childhood and prolonged dental bleeding. When I was 12 I got my period and it was a nightmare from the start. 10 days long, clots, debilitating cramps all kept me from school and activities every month. I was put on the pill at age 16 and told I was anemic. (I never had any fingernails and ate ice constantly, not realizing the correlation!)

After childbirth I bled heavily for 7 weeks. I loved how I felt when I was off the pill, so I tried to stay off after my daughter was born. I got my period back when she was 10 months old, and it got progressively worse throughout her toddlerhood. I had 4 unexplained miscarriages, and went to 3 different doctors, complaining of my bleeding. One female doctor told me, “That’s why they call it The Curse”, and did no testing. I finally got a GYN to take me seriously when I told her how much blood I was loosing (an average period is 30ml of blood – the entirety of a menstrual cup. I was emptying my overflowing cup every 60-90 min for the first day or two, and every 3 hours for the remaining 6-8 days). When she did a CBC my hGb was 5.5.

I was referred to an HTC, but I had a hard time getting them to take me seriously as well. I begged them to run a platelet aggregation when nothing else showed up, and it revealed a platelet disorder called Aspirin-like Defect. Even after diagnosis, I had a difficult time obtaining treatment. I could not get my HTC to give me a referral to an ENT so I could obtain a cauterization for my daily 1-2 hr nosebleeds that had been going on for over a month. I also could not get any treatment offered to me except for birth control and Stimate. Stimate did nothing for my bleeding; I bled so heavily on the Mirena IUD that I expelled the first one after 2 weeks. I tried that regime for 5 months and could no longer take the daily bleeding and side effects of Stimate, so I opted for a hysterectomy at the age of 38.

3 weeks after I was diagnosed, my then-5 year old daughter was, as well. She has random bleeds now that can be managed, but I know what she will face when she hits puberty. When I became an advocate for her, I understood how much had been lacking in my own care and treatment options. Her story will never be like mine. She will receive specific treatment for the actual disorder she has – not just birth control. She is 7.5 now, and I hope research will catch up in time for her first period.

Thank you for creating this space and drawing very necessary attention to women with bleeding disorders!!

I am a mother of 2 boys with severe Haemophilia A. Coming from a lineage of 3 carriers, I still was surprised when my first son was born because my great grandmother, grandmother and mother were never diagnosed. Also between them 13 sons had died. My first son had 7 blood transfusions in his first 8 years as there was no treatment in my country. As a mother of two bleeders with presents with easy bruising one should think of bleeding disorders in me, but Luke most women NO. 2 years ago I decided to have a factor assay done and found out I have 32% of FVIII activity. That changed my life as I now know why I bruise easily, have this heavy bleeding at childbirth and how to handle myself.

Bonjour je suis maman d’un petit garcon atteint d’hemophilie A sévère. Maladie que je ne connaissais pas avant qu’on le diagnostique à l’âge de un an. Durant sa première année de vie je savais que mon fils avait quelque chose car il attrapait facilement des bleus avec une boule. J’en ai parlé plusieurs fois aux médecins qui me répondaient tous la même chose (c’est normale c’est l’hématome). On ma également accusé de frapper dessus car juste le faite de le porter a bras on apercevait la trace de mes doigts sur son corps ! Aucune analyse n’a jamais été faite pour savoir si il avait un problème personne ne voulait prendre son cas au sérieux jusqu’au jour de ses 1 an ou une opération était prévue car il est né avec un testicule pas en place et qui devait être replacée avec une opération sous anesthésiste. J’ai expliqué au chirurgien qui devait opérer mon fils qu’il faisait facilement des bleus et le trouvant très pâle une prise de sang approfondie a ete prescrite par celui-ci.
La prise de sang a été un vrai calvaire car on a du le piquer plusieurs fois dans les mains jusqu’à ce qu’on parvienne a avoir du sang car les veines étaient fragiles et difficiles. De retour à la maison mon fils était très difficile et ses mains faisaient que gonfler, gonfler à tel point qu’il ne savait plus rien tenir avec ses mains et la j’ai couru aux urgences de nouvelles prise de sang ont été faite et la le diagnostique est tombé.. Mon fils, mon bébé est atteint d’hemophilie sévère.

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

Isabella sandi

Edad 7años

Con la enfermedad de Von Willebrand

This is my Journey of living with Haemophilia.

My Journey of living with Haemophilia