Accueil

My son his name is Master Chandra Prakash Sahu when he was just 3 months we seen on his body part green and blue color patches. We been to the child specialist he said these are the normal thing don’t worry about it. But day by day he was growing his activity was incrising very fast. And whenever he got fall or he bang on any place his body part become green and blue which is take very long time to recover so we went another children specialist doctor he said go for factor VIII & XI test so when report came he was elected by factor VIII but doctor said I don’t believe on this report please you go to another biggest hospital for the test so after few days we been to CMC Vellor again we gone through the all the medical test there we came to know that my son is effected by severe hemophilia A.

After many years of muscular-skeletal injuries and digestive system problems myself and my two daughters were diagnosed with Ehlers Danlos Syndrome just over a year ago. My youngest daughter gets scarily bloodshot eyes every time she’s sick with anything at all, my eldest daughter frequently has blood noses. One of her blood noses was so intense she bled through a bath towel and blood was streaming out of her eyes like a tap. I also have frequent blood noses, heavy periods, and when I gave birth to my eldest daughter I lost over 2L of blood. We all bruise very easily.

I feel like a lot of doctors are unfortunately too busy/overworked to piece together the big picture for their patients. You have wrist pain and a ganglion, see a hand ortho. You can’t swallow water, let’s send you to a GI doc. You’ve had pregnancy related complications, oh that just happens in some women. Finding a knowledgeable primary care physician or general practitioner who looks at things holistically can make a huge difference in your care.

mi historia es muy sencila vivo en venezuela ya hemos perdido suficiente suministro de factor y han ocasionado lesiones irreversibles. probablemente nos haran sacar un carnet de la patria para que nos puedan entregar el medicamento, la regente de la farmacia nos hace ir con hemorragias para suministrarnos el factor no importanmdole la distancia que hay del hogar al recinto hospitalario esta violando nuestros derechos y ademas esta abusando de su autoridad por ahora estoy buscando la manera de salir de este pais y obtener tratamiento y tener una mejor calidad de vida junto a mi familia

Hello, my name is Anne and I have Von Willebrand Disease. Disease type 1 to be exact. One of my largest complaints about growing up with a bleeding disorder, isn’t missing out on things in gym class, spending hours icing joint bleeds or even the pain that comes with them, it’s how misinformed people are. It’s crazy, some are even shocked that I can survive a simple paper cuts. Since a young age, I have found myself explaining to multiple class mates, teachers, and even health care providers what it means to have a bleeding disorder. Which isn’t an easy thing to do. It’s hard to admit to someone that you’re flawed, that you’re different. I have received a variety of interesting reactions to my “I have Von Willebrands speech”. Which if I can say so myself, I have perfected over the years. Through practice hadn’t made it any easier. Von Willebrand is a huge part of my life. It’s the most annoying thing in my life and most of the time I hate the fact that I have to deal with. It effects every decision I make. It has made things in my life much harder. But to be honest, I truly believe that it is the reason I am who I am today. And to me that is worth all the struggles that comes with it.

For many people with bleeding disorders, pain is a part of daily life. More than an uncomfortable annoyance, pain can affect every aspect of daily life—the ability to work a full day, attend school or engage in routine activities. Pain can limit physical abilities and dramatically affect relationships.

Every person with a bleeding disorder deals with pain at one time or another, often less than effectively. As a female bleeder (factor 5 deficient) – “It’s at the point where I’ve learned to live with the pain and live a anxiety and panic free life.” “Very little is needed to make a happy life; it is all within yourself, in your way of thinking.”

People with bleeding disorders should remain alerted when it comes to new or different pain. New pain could signal a bleed or an acute pain that needs treatment before it becomes chronic.

Recently, a few days ago I suffered from acute pain in the stomach at midnight. Immediately my dad rushed to bring in FFP (Fresh Frozen Plasma). On the next day also pain continued but it was little bit subsidized. I continued to take plasma for the next 2 days and simultaneously went for Sonography. It was concluded in Sonography that the cyst in ovary got rapture. When you feel pain, the first order of business is to identify the cause and eliminate it, in my case I first took the remedy as the same pain I have gone through previously also and it couldn’t be assumed that it could be a normal gastric pain or any other.

“It seems so simple, but most people with pain don’t think about
what caused it.” People will usually immobilize or do something to
relieve the discomfort at that moment, but not think about what caused it. The number one thing is to identify what the probable cause is and stop doing that.

I may be pessimistic in some things but related to problems of hemophilia I take it as a challenge and face it bravely so that it doesn’t make me weak in any aspect as I think I am very much close to God because he has chosen me for this. I’ve become more flexible in that respect. Changing a difficult situation isn’t always possible. By making a conscious effort you can train yourself to be more positive about life.

I am not a person who shares the pain to get sympathy and to be in the center of attraction, I don’t like this all things. I don’t want the people to say ‘poor girl’ etc., In fact, I want the people to say look at her such a brave and lively person. Life is forward momentum. If things are already feeling hard, why choose a miserable perspective to compound the despair? It can be hard – A heroic effort, even – to stand in the pain and choose an empowering way to look at a situation. Problems are often a question of perspective.If you change your perspective, you may see your situation from a more positive point of view.

recently, on 28th November while driving to office I met with an accident and got fractured in my left leg. When I was taken to the hospital; doctor informed us that Tibia bone is broken and surgery is needed to fix the bone. I started crying aloud that I don’t want any surgery to be done.. Luckily by the grace of god doctor said that bone can be fixed with the help of cast but that needs to be kept for 1 and a half month. Me and my family were ok with that; as been a factor 5 and Fresh Frozen Plasma is the only treatment – risks factors increases for surgery. 10 days after cast was placed on leg were terrible because of acute pain. And due to all this I got pissed off. I started questioning to god that why me? Every time God puts me in tough and hard circumstances which makes my confidence level drop down. All this time I am being reminded on a daily basis that the only one stopping me is me. I want to be unstoppable.

Last but not least I would say – “Something will grow from all you are growing through and it will be YOU”

“Women Can Be Bleeders Too”

I’m a 33 year old female and I have mild hemophilia with levels at 14-18%. I was diagnosed at 10 years old. I fought for many years to stop being called a symptomatic carrier to ensure proper and equal care. I am now on prophy and it changed my life. It opened my eyes to see how I should be feeling every day. Advocate for yourself and advocate for equal access to care – women bleed too!

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.

Hi,I am Anupama.I am a dentist. Hemophilia runs in my family.My only brother,Athul, has severe deficiency of Factor VIII. My maternal uncle was Hemophilic too.

I had symptoms all these years but found out that I have only 25% of Factor VIII this December, at the age of 32.

I have always had symptoms of bleeding disorder in the form of excessive and prolonged menstrual bleeding and joint pains.But I was diagnosed with a low level of Factor VIII (25%)only in the last December, at the age of 32.

Even with the family history of Hemophilia, potential carriers with symptoms are not getting screened for Factor deficiency.I was first treated for PCOS,later another gynaecologist said my sonograms was not suggestive of PCOS.
Most of the female bleeders, especially symptomatic carriers go through this turmoil.

My mother had severe menorrhagia since puberty and got total hysterectomy done a decade ago for the same.Her mother had severe bleeding complications during her ninth childbirth and her doctor had stated that her survival of the same was nothing less than a miracle.

I have been volunteering for the Hemophilia Society in my city,Hemophilia Society Calicut Chapter, since its formation in 1999 and am the KeyPerson of the Chapter since 2015.

We have been advocating for free factor therapy and a Comprehensive Hemophilia Treatment Centers in our city with the state Governent of Kerala.

Our works have been fruitful and the State is providing Factor therapy to registered patients through a scheme called Karunya Benevolent Fund.The State’s Social Security mission also provides a monthly pension of Rs.1000 to registered PwHs.

Because of our continuous efforts, Coagulometry and inhibitor screening has been started at Government medical college, in my city,Calicut in November 2017. I had my Factor level checked at the same centre

I am happily married to Hemant,who is a person with Hemophilia A , with inhibitors.
He is a digital marketeer and has been actively volunteering for his society,Hemophilia Society Hyderabad Chapter and nationally as an Executive Committee member of Hemophilia Federation (India).

We truly believe that Persons with Hemophilia and other bleeding disorders can live a normal,productive life if they have access to proper management of the condition.
And making that true is the aim of our life.

Thankyou,
Dr.Anupama Pattiyeri

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.

At the age of 35 after having my second child I was diagnosed mild hemophilia with factor levels of 26 % and VWD mild. My son was diagnosed at 6 months old with hemophilia A moderate 3%. Then the genetic testing began, I was confirmed a carrier and so was my mother. There are no other hemophilia carriers in my family that we are aware of. I had bleeding complications previously but were never of concern by my doctors. During my pregnancy with my second child who has hemophilia A I started having nose bleeds,and my body changed in some way or maybe I now became aware of some complications I had with bleeding in the past. I now have had various complications from minor procedures that required treatment to control my bleeding and anemia. Presently l only take treatment as needed or proactively if having elective surgery or procedure that may cause bleeding. I do respond to ddvap and cyklokapron and are used from time to time. I have had to have various iron IV replacement treatment as my iron stores were 11% after a bleed from a clomplication after a routine colonoscopy.I also suffer daily in chronic mayopascial pain. I am not sure if this pain is a result of my hemophilia or another genetic disorder. Getting answers is not always easy as a women with a bleeding disorder. I would love to get into a study to get further testing to see if my daily chronic pain is related to my hemophilia or another genetic disorder. I continue to try to educate myself to get the best care available. Please advise if there are studies open that may be of help in any way. Also I often wonder do other mild hemophilia carries suffer in daily chronic pain. Thank you all in advance for sharing your stories.