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My name is Debra Margolin and I was born with the type III Von Willebrand’s disease I have 0% and it’s not more than 3% Factor 8
I am currently 54 years old so that when I was born the only thing that was available to me at the time 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 has not been the FDA has not made it available for people with Von Willebrands 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 ankle had so many bleeds that 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 in the 60s and 70s and into the 80s the doctors did not believe that women has 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 and my first menorrhagia was 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 families and he said there is no way that I am taking the ovaries away from a 12-year-old girl and he Worked with hormones pills and all kinds of treatments to regulate my periods until adulthood
I was not sure even at that age with that I would be able to have children because up,until that point they really had been no documented case of a woman with type III giving birth
Again God smiled on me because I had a obstetrician who had the courage to see me through the pregnancy and they delivered 27 years ago a baby boy and 19 months later a baby girl who are now 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 so even though I didn’t see my baby for five hours after he was born I still have a baby boy and then a baby girl in the same way
The biggest obstacle that I have come across as a woman with a bleeding disease particularly when I was younger was that doctors did not believe that a woman could have a bleeding disorder
I would go into the emergency room with 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 that in my 30 years of my being 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 disease and whether it be type one or type two or type III there is a huge amount of 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 group who will not cooperate with the HTC is the gynacologists which 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 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 and 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 and 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 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 very similar to the hemophiliacs
The one thing that horrifies me is that since I was 12 which was 42 years ago they has been no change to 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 eight you were more than likely a hemophiliac
I contacted them and said it’s not only hemophiliacs that are lacking factor 8 but Vwd too. So if the publications about bleeding disorders going out don’t even acknowledge that the women 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 especially the ones who go into the ER because they’re the ones who most likely deal with a women with bleeding disorders
Ideally it would be nice to go into the hospitals and talk to the internist residents that are doing kind gynecology/ obstretrics rotations and to be able to give them a live person who has suffered through many problems and convincing people that I have a bleeding disorder
It makes me very sad that when I look at the women that are younger than me but still face this prejudice that they don’t have a bleeding disorder 42 years after I began my journey it just astounds me that the medical profession has not addressed this problem
Over all I must say that I have really been blessed I did not get HIV I did get hepatitis C which lay 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 put 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 is never come back I lost my ability to sleep and I also lost time you spend with my children ages 11 and 12
That I will never get back . What is the price you would put in a year as a mother?
The 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 project that was meant to help us save our lives in some case landed up killing us .
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 the runnning off to play and 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 have a rare connective tissue disorder also known as Ehlers Danlos Syndrome
As a child I was very flexible and bendy, I was also always in pain mainly my knees and ankles
As I got older, the pain only spread to other joints, doctors and specialists didn’t know why…
I am now 23 and every joint in my body has some kind of pain, I have many bleeding symptoms which includes heavy periods, joint bleeds and muscle bleeds
I have a constant struggle with anemia, I cannot remember what it feels like to not be tired, fatigued or worn down from doctors not taking me seriously
I feel embarrassed to live in a country where our medical system does not help their patients live a quality of life
As humans, we are made unique. Not one of us is the same.. so why are we being treated as tho we are?
Why is it doctors are not looking at each person as a unique case with unique options?
I would like to see a strong education medically for doctors and nurses in the future, I would like us patients to be receiving the treatment we need and to have each person looked at as unique as well as their medical status.. as we ARE UNIQUE!

[Born with Von Willebrand Disease, low Factor 8, and Ehlers Danlos Syndrome] I was the first of my family to receive a diagnosis of vWD at 19 years old following 5 years of continually menstruating and requiring weekly iron infusions whilst still anaemic. I suffer from mucosal bleeding, muscle bleeds and soft tissue joint bleeds. Now managed by prophylaxis. After 8 years of persisting my fight for adequate care, at the age of 27 I finally obtained access to my blood product treatment. It has significantly changed my life and my period is 4 days long now. This was largely due to the lack of medical data, education amongst clinicians, and awareness globally. I shared my story to the world on 17th April 2016 which went viral globally, it has connected me to hundreds of thousands of women around the world also affected by bleeding disorders and still counting. I am personally committed to being an global advocate and actively partaking in this positive change for women. THANK YOU World Federation of Hemophilia for ‘Hearing My Voice’! <3 Chloe Christos

Hello fellow bleeding disorder friends.
I was diagnosed with severe Von Willebrand’s Disease in 1990 & Platet Storage Pool Deficiency in 1997.
I identified as a Hemophilia treatment clinic patient for 2 decades -receiving Stimate, Lysteda, Humate-P, Iron Dextran infusions ad nauseum-until a VERY sharp HTC nurse identified criteria consistent with “something more” & referred me to a geneticist in 2010. After my severe Classic EDS diagnosis, 4 more relatives were identified with severe EDS, 2 with moderate, 1 with mild. Identification of EDS was the crucial element to getting referrals to the specialists needed to treat the debilitating co-morbidities that came with the defective connective tissue diagnoses. I am now 3 months post-op from a Chiari Malformation decompression & fusion of my skull to C1 & C2. The associated osteoporosis is being successfully treated, I am scheduled for C4-C6 fusion in June, I am receiving treatment for Dysautonomia/POTS, and I am receiving specialized EDS physical therapy targeted at my loose joints.
None of this would have been possible without my Hemophilia Treatment Center doctors & nurses!

Hello friends,I am Dr.Prajkta Kulkarni from Pune,India.I am Anatomy professor.I have 2 sons.Elder one is 10 yrs. old non-haemophilic and younger one Areen is 2 yrs.old with severe factor VIII deficient.He was diagnosed on the 6th day after birth in NICU after per rectal bleed.Since then our lives have changed a lot.He has recurrent intramascular bleeds every other day .The most worst was tongue bleed as he lost much weight during that period.I am waiting eagerly for gene therapy just like all hemophilic families.I work for creating awareness and fund raising for the hemophilic society by articles and lectures.We have no family history .Spontneous mutation may be the cause as per doctors.As inj.is expensive, it is indeed a Royal disease in that regard.As a mother ,it’s really difficult to see him with pain.Hopefully gene therapy would give a relief to all brave hemophilics !

Im sharing my journey with vwd on behalf of my 14 year old daughter. I first heard about Von Willebrands disease just a few months ago. A little background on our journey so far, my daughter started her periods at 12 years of ago, everything was ok until around 12 months ago when she started getting extremely heavy periods that would sometimes last a month, over the past 12 months my girl has endured countless blood tests, iron infusions as she is more often than not anemic, this past month she has started fainting due to low iron stores as well as low blood pressure, she isnt able to take iron tablets daily as her iron stores the get gar too high quickly and has to go off them, she is rarely able to last a week at school and if she lasts she comes home and sleeps for hours and will wake to eat, interact before sleeping again until her alarm for school goes off, its very much on a day to day basis as to whether she will attend school. So far we have not been able to be successful with getting a treatment plan in place for my daughter as official diagnosis has only neen very recent through a very lax hematologist. My girl feels very alone in her journey as she is the only one in our family with vwd, she is exhausted and frustrated that her young teen days are spent in her room instead of out enjoying life with her friends. I will continue to be my daughter’s voice and will not stop until we get treatment sorted for her. Its exciting that WHF day is focusing on women and young girls with bleeding disorders.i know our story is a very familiar one but i do hope that getting our experience so far out there can be helpful to somebody. Vwd is a very lonely journey at times.

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.

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.

Hola, mi nombre es Paula Flórez tengo 37 años y tengo un desorden de coagulación . Fui diagnosticada con trombopatía de granulos alfa. He recibido varias transfuciones de plaquetas ya que es la unica forma de tratar las hemorragias . Yo no puedo tomar ningun medicamento . Ya me hicieron la histerectomía pero gracias a Dios tengo dos hermosas hijas . No conozco a nadie mas que tenga el mismo diagnostico . Saludos a todos y espero que De la mano de Dios todos tengamos la valentía de enfrentar todas las pruebas dificiles de la vida .

When I was 12 years old I had a tonsillectomy nine days later I woke up haemorrhaging from the site of removal was taken by ambulance (and had a helicopter on stand by) to the John Hunter Hospital where they took my into theatre for a ten minute procedure to quarterize the site they attempted this three times without success, they decided to suture the area but when the attempted to wake me up it didn’t hold I was then put back under anaesthetic and they sutured the area again this time putting me into an induced for 24 hours. I was in theatre for 6 hours and required three blood transfusions and factor eight. This was when I was first diagnosed and with Von Willebrands disease

A few months later I started my first period within a few months of my first period I started seeing my first gynaecologist since then I’ve seen several different gynaecologists trialling different hormones to help with my period, I’ve bleed sometimes for months and years straight without a break in between. This limited me from doing a lot of things even school I’d have a lot of time off of school due to passing out or due to the point that I could not sit threw an entire 50 minute lesson without needing to leave to change pads not just one but two or more. I’d have to sleep with towels so I wouldn’t bleed onto the bed. For me a light day was being able to wear one night time pad instead of two or more maternity pads, sometimes I’d even wear diapers with maternity pads. Occasionally I’d pass out during tafe or school and need to be taken away by ambulance. I’m 16 years old now and still have proper solution other then trail and error with hormonal treatments that can have horrible side effects

Hola, mi nombre es Ana Almendares, en mi familia la hemofilia facto Vlll severa es hereditaria y la vida me ha preparado desde mi infancia para entender, comprender y aceptar esta deficiencia sanguínea. Agradezco por todo lo vivido, ya que fue lo que me ha ayudado a Orientar y guiar a mi hijo Ignacio que hoy tiene 18 años y hasta el momento ha logrado crecer, vivir y aceptar los procesos de su vida con fortaleza, optimismo y mucho amor.

Gracias por dedicar un tiempo a las madres, se que muchas, que no tiene un histórico en su vida, el desconocimiento de esta deficiencia sanguínea, les produce mucha angustia y frustración, sobre todo por no saber cómo resolver y lograr mantener la calidad de vida de su hijo y familia.

Hemophilia..! I hadn’t heard this name before year ago, when my health condition was too worst, then I got know I was Hemophilia person.when i was kid i used to play all outdoor games, i had so many injuries.whenever I get injured, I bleed spontaneously. docter’s also didn’t tell about this, cause they were also not aware.after 26 years when I was suffering bleeding in my hip, I was afraid I just felt like am I going to die? I took so many medicines, I realize this is not something that we can cure so I have decided to die, but I dont know suddenly what happend. I googled and I found something similar between my hemophila symptoms and my condition, so I googled again n again and I found very much similar then I found a website called Hemophilia.org. I was tired of this pain so I have mail delhi chapter, and Kolhapur. then some person came into my house he told me if you are really hemophila person we have make some tests then after 4 or 5 days I have checked blood and they have found I was severe Hemophilia B person. I wasn’t shocked beacause somewhere I knew that might be I will be wrong but I wasn’t.

I am not blaming doctors, am just saying everyone has to aware about this hemophila thing so no one will suffer.I went once seminar and I found so many people like me and I realize I am not the only who is suffering.so I am different person not as patient but special. we all are specials. i just want to say don’t loose hope. hope is the one thing you can keep yourself alive.