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