"Clear your mind of can't"
My name is Manon Degenaar-Dujardin, 37 years old, and I live with my husband Tjeerd and two sons, Fedde & Thomas, in Haarlem, the Netherlands. I have Von Willebrand disease type 2N/1.
The first diagnosis, hemophilia, was made when I was 1 year old. I had large bruises in unusual places, which, even at a later stage, increased in size. At first, I didn’t receive effective treatment for bleeds, predominantly in muscles and mucosas. After a while I received factor VIII, but that didn’t really help. In hindsight, that’s no surprise, when you have both a low vWF and FVIII, that don’t want to bind together. This was eventually discovered in Leiden, the Netherlands, but not until 1990, after a very difficult time, which started when I had my first period. This menstruation simply wouldn’t stop; Octostim (desmopressin) nose spray (flown in from Sweden) and Cyclokapron (tranexamic acid) brought no relief whatsoever. After 3 months and extensive deliberation between specialists in Leiden, Nijmegen and my earlier place of residence Heerlen, I was admitted to the hospital.
At first, blood transfusions were the only treatment, until the doctors in Leiden learned about the existence of Heamate P. I started with a treatment scheme consisting of Cyclokapron, Heamate P and strong contraceptives, which finally achieved results: from now on my period only lasted 2,5 to 3 weeks a month. Not ideal, but for the moment the best modern medicine could offer. All this has had a large impact on my life: developing self-confidence and trust in your body is very hard. Having a normal life like your peers isn’t always easy, and guarding your boundaries (with respect to your health) often requires making sacrifices. During my teenage years, I often made choices that weren’t exactly good for my health; but I needed to make them, to get where I am in life now. In my own defense, unlike now, there wasn’t much information available to either doctors or patients. Especially, not about the combination of type 1 and 2N von Willebrand.
In 1997, when I was in college, I got in touch with the Dutch Hemophilia Society NVHP; my parents had been members since I was diagnosed. On the advice of participants in a special activities weekend for young adults, organized by the NVHP, and board member Chris van den Brink I sought treatment at the AMC (Academic Medical Center Amsterdam). Now I got a proper treatment scheme, and prophylaxis with Haemate P allowed me to lead a relatively normal life. I still get my fair share of trouble, after all we’re dealing with a chronic disease, and problems aren’t limited to menstruations, pregnancy and childbirth. It took quite some time before I could reconcile myself with the ordeals I have had to face. And accepting that my children and I have a blood clotting disorder, wasn’t easy.
On my way to acceptance, I’ve been actively supporting the NVHP, the Dutch Hemophila Society, for years as volunteer and, eventually, as general manager. Because I know it’s vital to have and maintain adequate care for people with blood clotting disorders, at least in the Netherlands, and ideally worldwide, I participate in the project Blood relatives.
My mind is strong enough; everyone with a serious blood clotting disorder knows diseases like this help you develop a good share of perseverance. Now I need to get in shape physically, quite a challenge, about which I will share some more later!
What you think you become. What you feel you attract. What you imagine you create. ~ Buddha