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Yo tengo un niño con hemofilia A moderada y esta padeciendo de dolores en la articulación del codo izquierdo y ya tiene una pequeña limitacion al estirarlo y estoy desesperada necesito saber si hay algo q le pueda echar una crema o algo para q logre su estiramiento total

Me entere que tengo hemofilia A a los 40 años después de una cirugía de apendicitis…gracias a Dios estoy vivo ya que sufrí hemorragia despues de la operación,mi hermana que tiene un hijo con hemofilia pudo advertir a los doctores la posibilidad de que mi hemorragia era causada por la hemofilia por lo cual me trasladaron al Hospital de tercer nivel del IESS Esto me sucedió el 13 de septiembre del 2019

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.

¡Orgullosos de compartir el hermoso encuentro de nuestra comunidad por el Día Mundial de la Hemofilia!

Hola soy una niña de 4 años con hemofilia A severa. Tengo un hermano con hemofilia A severa. Voy a la escuela me lo paso genial y juego con mis amigas. Vivo en una isla preciosa donde nadie más tiene hemofilia. Mi hermano me ayuda a pincharme y yo le ayudó a él. Mi mami dice que tenemos mucha suerte de poder pincharnos y disfrutar de jugar y hacer deporte, etc. Espero que cuando sea mayor pueda pincharme menos y no tener dolores cuando el factor va disminuyendo en mi cuerpo. Creo que sólo hay dos niñas con hemofilia severa en el mundo. Mi mami no se lo podía creer pero, lo importante es que vivimos en un buen momento y hay mucha esperanza. Un abrazo a todos y todas las personas de la gran familia de la hemofilia. Seguir investigando por favor.

Soy Miguel tengo 5 años a los 5 meses de nacido me diagnosticaron con hemofilia A severa déficit del 0.3 y fue y sigue siendo un proceso muy difícil para mi y para mis padres más porque mi hermano menor de 7 meses al parecer tendrá hemofilia también ya ha presentado indicios.

I am a hemophilia treater. My patients had a poor joint function during the past decades. Now we controlled the bleeding well with recombinant factors. I hope my patients could keep their diligent in keeping them well.

A Libreville, l’hémophilie est une affection méconnue du grand publique et même dans le milieu médical. Les collègues médecins ont du mal à croire qu’en un an nous ayons pu avoir une cohorte de 25 patients.
La médiatisation que nous avons faite pour la commémoration de la 29e JMH a permis à beaucoup des nos compatriotes d’entendre parler pour la première fois de cette affection. Les personnes vivant avec l’hémophilie ne sont pas visibles dans le système de santé gabonais.
L’insuffisance de compétence et l’absence de médicaments poussent les patients à se renfermer dans leur famille et voir la maladie évoluée vers les complications.
Le don de facteur VIII que nous recevons régulièrement depuis un an nous permet des donner aux patients l’espoir d’une vie meilleure.

TENGO 4 AÑOS Y A LOS 3 AÑOS CON 7 MESES ME DIAGNOSTICARON HEMOFILIA A SEVERA..

PARA MI Y MIS PAPAS ES UN CAMBIO FUERTE, EN ESPECIAL PARA MI MIS ARTICULACIONES SE INFLAMAN.

I was blessed with this bundle of joy in November 2017. He was everything a mother could ask for.
In June 2018 he started crawling at the age of 6 months, that was when i noticed some unusual bruises around his knees and elbows (pressure points when crawl). I did not take it too serious first, but when it he started showing recurrent bruises with swelling i decided to see a paediatrician. After series of consultations and blood examinations a blood sample of him was send abroad to check levels of his blood clotting factors/ clotting protiens for suspected muscle bleed.
Recieved the LIFE CHANGING reports in August 2018 which showed that his blood clotting factor8 level was at 1%, so was diagnosed with HEMOPHILIA A. That was first time i heard the word Hemophilia.
Hemophilia patients are very rare in Maldives. He is the 18th case recorded as per Hemphilia society of Maldives.
Since August 2018, he has been admitted in hospital 5 times to treat bleeds. The latest report of him shows that his factor level is at 0% meaning that his condition is at a severe level.
His doctor have advised to start prophylaxis (regular dose of factor injection) ASAP. However factor availability is an extreme challenge. (since its not available from pharmacies like regular medicine).

Now every day is a battle, a battle with him for his survival. #lifeofhemophilic #hemophiliaday #17042019

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!

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.