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My name is chandan Kumar , suffering from severe Hemophilia a with positive inhibitor .I was born in a lower middle class family in a most undeveloped state of India. Hemophilia is unknown to all of my family . Whenever I got extenal bleed in childhood ,my parent went to a local medical practitioner ,they tried to stop bleed but failed ,so he referred me to a medical college near to my village ,where doctor said to my father, your son may be a suspected case of Hemophilia and they need plasma all time.
But in case of internal bleed ,I totally depends upon the home remedies and pain killer that was prescribed by a local medical practitioner.These type of treatment even worse my situation.Almost 15 days of a month I spent on bed with nonbearable pain.
In 90s awareness regarding Hemophilia was almost negligible ,I didn’t know the besic treatment like rice and factor.In month of june year 2000 ,when I was studying in standard 8,I saw a news on a local Hindi news paper regarding the awareness program of Hemophilia in the capital city of my state Bihar.Next day I went that place with my father and finally sun rose for me .I got to know all about Hemophilia society and basic treatment .Same day I got membership of Patna Chapter .But till that day my all joint got arthritis except finger and left knee.
But thanks to God ,finally I got to know about physiotherapy ,met with expert doctor and I had been started the exercise.I went to children camp , attended almost all state level meeting . Awareness camp ,and ultimately I got confidence and now I am a engineer ,worked as a software engineer ,banker .
I had been working as a youth group coordinator of Patna Chapter ,now I am vice president of bhojpur chapter.To help Pwhs of my country ,my state is my priority ,we arrange awareness meeting ,many programs , lobbying with government for free ahf and best treatment .

Thanking you
Chandan Kumar

My name is Debra and I was born with type III Von Willebrand’s disease. I have 0% with not more than 3% Factor 8. I am currently 54 years . When I was born the only thing that was available to me was plasma.
In the 70s cryoprecipitate became available and it was only when I came to the USA at the age of 24 that I was able to use factor because prior to that it the FDA did not make it available for people with Von Willebrand’s Disease.
When I was a child I suffered from mostly torrential bloody nose bleeds and when I was about 10 I started to get joint bleeds in my ankles and knees. Eventually my knee and ankle had many bleeds. At the age of 21 I decided to have an ankle joint fusion called an arthrodesis and I have to say it was one of the best things that I ever did for myself. But the biggest obstacle that I have ever had to face is that in my early years was the fact that during the 60s and 70s and into the 80s the doctors did not believe that women could have a bleeding disorder Today we know that between type 1, two and three there is a possibility that 10% of the people have some form of Von Willebrand’s disease. When I started to menstruate at the age of 11 almost 12 where I experienced my first menorrhagia with my second period. At the age of 12 they wanted to give me a hysterectomy but thankfully for me the gynecologist was a personal friend of the family. He said there is no way that I am taking the ovaries away from a 12-year-old girl. He worked with hormone pills and all kinds of treatments to regulate my periods until adulthood. I was not sure even at that age that I would be able to have children because up until that point there really had been no documented case of a woman with type III giving birth. Again, God smiled on me because I had an obstetrician who had the courage to see me through my pregnancy and then delivered a baby boy 27 years ago. Nineteen months later I had a baby girl. They are now ages 27 and 25. At this time my doctor felt that it would probably be better to give me a general anesthetic and the C-section. She felt that a natural birth might cause me to hemorrhage while pushing and at that point she was not going to risk giving me an epidural because she wasn’t sure of the effect it would have on my spinal cord. As a result, I didn’t see my baby for five hours after he was born but I had both children the same way. The biggest obstacle that I have come across as a woman with a bleeding disorder, particularly when I was younger, was that doctors did not believe that a female could have a bleeding disorder. I would go into the emergency room with an ankle bleed and they would want to x-ray it and stick the needle in and try to draw the fluid out and eventually my poor Hematologist had to be called at the crack of dawn to explain to them that “yes I did have a bleeding disorder”and that all I needed was to get some cryo or plasma. When I came to America I was hoping that the attitude towards women with bleeding disorders had changed but to my horror I have found throughout the 30 years of living in this country there is so much ignorance regarding women with bleeding disorders. It has recently been found that women or men in the population one in 10 might have vWD and whether it be type one or type two or type III there are many people who have this bleeding disorder . However sometimes they don’t know about it until they have a procedure done. In my experience one of the largest groups who will not cooperate with the HTC is the gynecologists. This is unfortunate because in women with bleeding disorders that is one of the primary issues that we face. They always believe that it’s gynecological and the hematologists believe that it is hematological. I once had a massive hematoma on one of my ovaries and my gynecologist said that I needed to go see a gyno/ oncologist because he thought it was cancer. I knew that it was a hematoma my hematologist knew that it was a hematoma. It is just world that we live in today. I’m sure that the gynecologist sent me to an oncologist to cover the liability but if they had listened to my hematologist who at the time had been involved with the hemophiliacs for 40 years then they would’ve spared me the agony of going to an oncologist. Thankfully, when I met the oncologist she was very open-minded. She spoke to my hematologist and she said it’s definitely a hematoma. It was treated as a hematoma. It is the gynecological doctors who will deal the most with menorrhagia, and if they were to make contact with the HTC they would understand that this is not something abnormal in a different area but this is as a result of vWD. Since arrival of Facebook I have been able to participate in many groups including a severe Von Willebrand’s group. It is wonderful to have a group that shares ideas and information’s and also a hemophiliac group because some of the issues that we share are very similar to the hemophiliacs. The one thing that horrifies me is that since I was 12 (which was 42 years ago) there has been no change in the attitudes towards women was bleeding disorders. Very few young Internists are aware of it, and that to me, is a very frightening thought . I recently read an article in one of the hemophiliac publications that said if you had less than 50% of Factor VII you were more than likely a hemophiliac. I contacted them and said it’s not only hemophiliacs that are lacking factor VIII but vWD too. So, if the publications about bleeding disorders don’t even acknowledge that women can have bleeding disorders, then what hope do we have to show the rest of the world? My quest going forward is to be able to get medical student to learn about all types of bleeding disorders. These are the doctors who most likely deal with women with bleeding disorders in an emergency situation. Ideally, it would be nice to go into the hospitals and talk to the internist residents that are doing gynecology/obstetrics rotations. As a person with a bleeding disorder, I would be able to give them information about how I have suffered through many problems and could convince them that I have a bleeding disorder. It makes me very sad that when I look at the women that are younger than me, they still face this prejudice that they don’t have a bleeding disorder. Forty-two years after I began my journey, it just astounds me that the medical profession has not addressed this problem. Overall, I must say that I have really been blessed that I did not get HIV. I did get hepatitis C which was dormant in me for 25 years and became active around 15 years ago. At that point there was a clinical trial for Ribavarin and interferon in which I was able to participate . It was 48 weeks of Hell. I lost my hair. I lost a huge amount of weight. I lost my short-term memory which has never come back .I lost my ability to sleep. I also lost time with my children ages 11 and 12 that I will never get back. What is the price you would put on a year that was taken from me as a mother? There were psychological effects on all of us over the years and it makes me angry that through the carelessness of people that innocent people had to be infected with these awful diseases. The product that was meant to help us save our lives in some cases ended up killing us . I am happy to find out if the new Hep C treatment is just a couple of pills and takes just three months, I believe. So, in the 15 years medical technology has grown and that’s wonderful. The other greatest development since I was a child is the formation of camps that the kids are allowed to attend. Thanks, in part to Paul Newmann, with his wonderful ‘Hole-in-the-Wall’ camps. When I was a child and my school used to go on the trip with the 7th or 8 graders I was always the child that was left at home because the school didn’t want to take the risk of taking me along. I was the only child excluded. So when I see pictures of kids at camps, getting Factor and running off to play, climb and swim, it is a beautiful sight. At this time in my life I would like to advocate for the bleeding community and I hope I am able to this because as the song goes “I’m Every Woman and I intend to fight for all of them.”

I come from a family with bleeding disorders so it did not take me long to be diagnosed with vWD type IIA at Children’s Hospital. Since I was 10, I had been a part of the Bleeding Disorder community having gone to Camp Bold Eagle in Michigan, a part of NHF’s National Leadership Institute, and now currently I am the liaison for the women’s booth at the Glasgow WFH event. I’ve never looked at vWD as a disease, I’ve always looked at it as an opportunity to network and meet people with the same interests as me. I am proud that WFH is globally recognizing women and girls with bleeding disorders.

Mi nombre es Alexandra Robledo Riaga, soy docente, pedagoga musical para ser más exactos, tengo 43 años, mi papá, Álvaro Robledo Riaga, fue el fundador de la Liga Colombiana de Hemofílicos junto con mi mamá, Maritza Riaga de Robledo. Al ser hija de hemofílico soy portadora obligada de hemofilia. Eso lo supe desde muy niña; un poco más grande pude entender por qué mis dos hermanos hombres no tenían esta condición y yo sí. Bastaron un par de dibujos con colores sobre los cromosomas “x” y “y” para comprenderlo. Al principio me decían que yo transmitía la enfermedad (en esa época la hemofilia se consideraba una enfermedad, no una condición), pero que no la sufría. No pasó mucho tiempo antes de comenzar a manifestar ese “no padecimiento” de mi condición. Todo lo que me ocurría lo atribuían a cualquier cosa menos a tener una disminución de mi factor VIII en la sangre. Poco a poco comenzaron a relacionar que mis sangrados abundantes cada periodo menstrual, la deformidad de mi cara cuando me extrajeron las cordales, el haberse volteado casi totalmente mi pie derecho cuando me rompí los ligamentos (todo por un sangrado interno evidente) y otras “linduras” más, tenían que ver con el hecho de ser portadora de hemofilia. Vieron que yo manifestaba sangrados como un hemofílico leve. ¿Por qué nunca aceptaron esto si era algo obvio? Pues hasta en las “enfermedades” el machismo predominaba y de qué manera. Dejar de ver a la mujer como un “verdugo” que le pasa al hombre esta “enfermedad” por la cual el hombre sufre, y comenzar a verla como partícipe también de dolencias y sufrimientos fue algo bastante complicado de entender en este medio también excesivamente machista que es el mundo Médico. Fue una “pequeña” batalla que tuve que tener apoyada totalmente por mi mamá, quien estuvo hablando con muchas otras portadoras para ver si reaccionaban como yo, a lo que veían en mí. No fue fácil, por esto, convertirme en un conejillo de indias porque todo el tiempo estaban haciéndome seguimiento para ver qué tanto y en dónde sangraba o se manifestaba mi condición de portadora. Cualquiera que no supiera de esto creería que era una mujer abusada físicamente porque me mantenía llena de morados (pequeños hematomas) que me salían al golpearme levemente contra cualquier cosa. Para una persona que no tuviera esta condición pasaba inadvertido, en mi caso mi cuerpo me lo hacía notar. No se imaginan cómo quedaba cada mes luego de mis periodos menstruales… yo sentía que tenía un glóbulo rojo corriendo por mi cuerpo… la anemia cada vez se hacía más evidente y tuve que ir donde mi ginecólogo quien me dijo que tomara anticonceptivos (con muy bajo contenido hormonal) para regular y frenar un poco mis sangrados. Eso lo hice durante 22 años hasta que mi cuerpo comenzó a rechazar las pastillas. Luego de pasar por muchas otras experiencias buscando algo que me evitara la anemia fija, decidí que ya era tiempo de convencer a los médicos de hacerme una histerectomía (sacarme el útero). Desde siempre supe que no quería tener hijos, ya que vivíamos con mi papá y mi tío (hermano de mi papá), ambos hemofílicos, y ver sus dolores constantes, sangrados, limitaciones, etc, etc, etc, me llevó a decidir que si la vida me tenía destinada a ser mamá, pues prefería adoptar. En esa época la supervivencia de un hemofílico no era muy alta, los tratamientos eran muy costosos y no había todo ese cuidado preventivo que existe hoy en día. Por eso a mis cortos ocho años ya tenía decidido que prefería darle la posibilidad de tener un hogar a un niño sin padres, que tener yo un hijo propio. Además, a mi condición de portadora se le sumaba una situación con mis riñones que hacía que tuviera un embarazo de altísimo riesgo para mí si llegaba a quedar embarazada. Por eso mi decisión. Por otra parte, al ser docente, he estado laborando con personas de todas las edades, en especial niños y eso ha cubierto una buena parte de mi cuota de maternidad.

Durante muchos años hice parte del staff que apoyaba a los hemofílicos, portadoras y sus familias en Colhemofílicos, haciendo lo que llamamos Terapia Lúdica. Era una agradable manera de hacer ejercicio sin sentirlo. ¿Cómo? Con lo que más nos ha gustado hacer a los humanos por siempre…. Jugando! Al jugar estamos abiertos al goce, a la diversión y a relacionarnos con otros como niños y eso hace que las limitaciones físicas que podamos tener pasen a un segundo plano y sin proponérnoslo vamos haciendo estiramiento y fortaleciendo los músculos. A la mayoría de nosotros no nos gusta hacer ejercicio, pero si nos dicen bailen o jueguen es otra cosa!

En este momento me dedico a ser docente y todo lo relacionado con la salud en otros niveles (no tanto lo alópata) me interesa muchísimo, porque me he dado cuenta a través de mi vida, que no podemos ver al humano como un conjunto de partes sino como seres integrales a quienes todo lo relacionado con nuestras emociones y sentimientos se traducen a nivel físico en dolencias y mal-estares.

With a little bit of luck…..

In 1979, and at the age of 2 weeks, one of my fingernails bled. The pediatrician asked my parents to put pressure on it using bandages. It never stopped. A few weeks later, I suffered an intracranial bleed which led to experimental surgery. During that time, the Hemophilia Treatment Center team (from the Puget Sound Blood Center now called Bloodworks), working with others, discovered that I was born with a severe and rare congenital bleeding disorder called factor V deficiency. No one else in my family had a bleeding disorder, so it was considered to be a mutation. They used FFP during my surgery and afterwards which helped my blood to clot. From that time on, my life unfolded into a series of unintended consequences and complications sometimes referred to as comorbidities.

The experimental surgery included removal of brain tissue causing seizure disorder and neurological deficits. I have developmental delays and a weakness of the entire left side of my body. I experienced grand mal seizures a few years ago. This meant it was time to change seizure medications as they were no longer effective. The trial-and-error to find the right medication was a complicated process because the seizure medications I needed to take caused bleeding. Now with an ongoing possibility of serious bleeding, I am infused with FFP prophylactically twice each week.

I want to thank the many volunteer blood donors who donate their time and FFP. I am so grateful.

I am now 37 years old and hoping to be lucky enough to have a company create a factor concentrate for those who have factor V deficiency. I want to be able to safely travel to Italy, to see where my parents were born.