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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.

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.