Accueil

I am the mother of a gorgeous 4 month old baby that was diagnosed at birth with haemophilia B. I at the time had never heard of a bleeding disorder but never the less I’m trying to become more educated and aware as I can for my baby. Everyone’s stories are helping my partner and I learn more each day about haemophilia and I just want to thank you all for this.

Hello! Happy World Hemophilia Day!

I was diagnosed at the age of 6 months after the bleeding didn’t stop after circumcision and doctors figured out that something was wrong with the coagulation cascade and it turned out they were correct! I was missing Factor VIII – completely – it just wasn’t there. Less than 1% as they call it.

Since then it has been a roller coaster ride. I have multiple cystic lesions with three major surgeries including one in which DHS was implanted after a pathological fracture of Hip – well that was a decade ago. Time flies!

More importantly, it is because of Hemophilia that I have been able to meet some of the most caring, loving and smart doctors in our part of the world. I was lucky enough to serve at the NMO of my country and was able to interact with the brilliant team which works day and night at WFH to make impact in the lives of PwBD around the world and they do make a huge difference.

I have myself seen closely for three years how the WFH Humanitarian Aid Program has changed the quality of treatment for PwBD in Pakistan. There are patients who have been saved from a life long deformity and they might never hear about these complications of cystic lesions because of the support we have had from WFH. Is everything perfect? No, but it is definitely better for a lot many patients especially those registered with the HFP and for that we as a patient community are eternally grateful to all those at WFH! You guys are the real heroes!

It’s been a journey that has shaped my worldview and through social media platforms and WFH events, I have connected with enough people of bleeding disorder community that I rarely feel alone and that is extremely important because in a globalized world like ours nobody should suffer alone. Just a few words from a fellow bleeder sometimes go a long way in consoling a person when he is going through the worst.

Today is the day when all the community should come together and hold each other to ensure that nobody has to suffer alone. A society is known by how it treats those who are most vulnerable within it.

In my interactions with PwBD over the last several years I have found stories of hope, pain, courage, anguish and at times even frustration, but no matter how dire the situation I have never met a PwBD who is ready to give up and that makes them undefeated!

P.S: This is me visiting a famous Gurdwara in Pakistan! Yes we have them here and they are well protected so it’s time for all you fellow bleeders to come visit and we will show you around! 😀

Meeting patients and families, hearing the numerous stories as if we were sitting around a kitchen table so many moments of inspiration, strong determination and conviction in knowing that proper care and treatment is essential to have a good quality of life. Outreach allows the community to connect and blossom. Whether it is hemophilia, VWD or another bleeding disorder, connection is what brings change on the local and global level. Onwards!!!

Saludos,
Mi nombre es Edison soy PCH A, tener una condición de vida a sido un poco complicada por el tema de aceptación propia y de los demas, en algunos casos la comprensión y entendimiento de lo que tengo esto incluso en médicos, pero aun así he podido sobrellevar hasta donde estoy.
A veces nos limita a muchas cosas el mismo hecho de no poder socializar con el mundo cuando sabes que no te entenderán.
Gracias a Dios y a las personas que en algún momento lograron entenderme he luchado para poder seguir adelante, a mis 32 años tengo un trabajo una profesión mi esposa mi familia que aun me sigue apoyando a seguir en pie.
Ahora entiendo que Hemofilia se me ha convertido en una bendición y en oportunidades.

I was 4 years old when I was diagnosed. My parents said I’d wake up in the middle of the night every night covered in blood due to a severe nosebleed. The doctors thought at first I had Leukemia but the results showed that it was actually Von Willebrand Disease type 1. My parents have never heard of it till then nor do they know which side of the family it came from.

Growing up I wanted to do gymnastics but I was such a liability, no gym would take me, my parents were even willing to sign legal paper work but still was denied.

In first grade I stayed the night in the hospital due to a nosebleed that wouldn’t stop – my DDAVP wouldn’t work, I went through 2 boxes of tissues in 30 minutes. It was a long a night.

In second grade I was finally able to do soccer for my school, just a little cub where you learned the basics and got to start competitive skating at the local rink which only brought on multiple bruises which a couple years later I stopped. It wasn’t until I was in 8th grade did my parents begin to “shorten the leash”. I was able to cheer with my friends and in HS started field hockey, tennis and track. My hematologist at the the time was EXTREMELY wary on this but she and my parents agreed I was old enough to know what to do Incase an episode happened and they weren’t around.

Since high school, my nose bleeds have subsided quite a bit, but I do still find random, unexplained bruises quite often. I’ve had doctors ask me what vWD is, even look it up with me in the room because they had never heard of it. Each time my response is “it’s like Hemophilia but it’s not Hemophilia”. Growing up I’ve had teachers and subs refuse to let me go to the nurse so I could get my medicine when I was bleeding, they’d call me a liar, say I was barely bleeding, etc. – you name it they said it. I’ve had classmates yell at them saying I need to go regardless how bad it is, I’ve walked out of the room multiple times when they wouldn’t let me because they doubted me.

I’m 26 years old now. There are still people that doubt me. When I’m in pain, my loved ones make crude remarks about it. They don’t realize that yes it does happen often, but it takes a toll more than they know. Ice and Tylenol doesn’t always help.

I’m 26 years old now. I let it stop me for so long. I let people’s words go in one ear and out the other. I didn’t ask for this life but I sure do embrace it. It’s apart of me. It’s who I am. It has its ups and downs but so does everything in life. I don’t let it stop me anymore!

Hi,my name is Edwin,I am 9 years old. I have hemophilia A. My right ankle often hurts, but I swim for 8 hours a week. I hope my right foot will recover as soon as possible.

Every day – the world over – Kedrion stands by those affected by hemophilia and other coagulation disorders, also by supporting global and local initiatives aimed at increasing awareness of these conditions and access to their treatment. This World Hemophilia Day, a Kedrion delegation is in Antalya, Turkey, where the company works with Turkish medical and patient communities to improve access to plasma-derived therapies.

The voluneer team from the Nicaraguan Hemophilia Association are stronger than ever, working together to improve the opportunities in health for People with Hemophilia. From Central America we send the best wishes and invite you to don’t give up in this fight.
–
El equipo de voluntarios de la Asociación Nicaragüense de Hemofilia se encuentra más unido que nunca, trabajando por mejorar las oportunidades en salud de las Personas con Hemofilia. Desde Centroamérica enviamos los mejores deseos y les invitamos a no decaer en esta gran lucha.

I’m 30 years old and I was diagnosted with Von Willebrand Disease in 2014.

I am in the Accounting & Finance department at the WFH. For many people numbers may seem boring and dull, but I know that behind those numbers there are hope and help for many people all around the world. I am proud to be part of this world.

It was a mid year 2014 first I need a surgery for gallbladder stone removal through leporoscopy. The operation was successful but internal bleeding can’t stop, my physicians all are serprised cause they can’t found any cause for bleeding. After 15 days from Chattogram to Dhaka I need to shift better treatment.Those 15 days I am also in hospital bed loose lots of bloods. Meanwhile physician in Chattogram done another surgery which called laperoctomy.
But they can’t stop bleeding.
In Dhaka physician again open my abdomen and send blood sample in India. I need to pass 45 days in an expensive hospital in Dhaka around 45 days. My family needs to seal lots of assets for my treatment. At last the report came from India that I have Hemophilia B.
Those two months turn my life in a big U turn along with my family.
Due to several time surgery I need to again lay in operation bed for repairing harnia surgery in Cheannai,India year 2018. Those operation I need to take Factor IX which was so expensive. I lost more than four years but learn what Hemophilia is how to manage it and learn the great truth that “Life is not beautiful, it’s so color full “

Ten years ago I never imagined I would grow from a regular person with bleeding disorder into well-known global leader of bleeding disorders’ and rare diseases’ communities as I am today. Fighting for better treatment for bleeders in Latvia, helping friends around the world, constantly learning and overcoming myself, I count this as blessing rather than curse.
I was diagnosed with von Willebrand disease, one of many bleeding disorders, around 30 years ago, and there is just one more step to confirm my family’s and my diagnosis left. Unfortunately, not yet possible in my country. Lack of diagnosis and proper treatment influenced many of my life choices.
I am happy I can do my best to help other girls and women around the world live their best. I am sure it is worth it and the journey becomes shorter with every step we make.