Despite being the most common genetic bleeding disorder, Von Willebrand’s disease is scarcely heard of or talked about. The genetic disorder affects 1 in 10,000 and can remain undiagnosed as sometimes the symptoms are minor. But what is it like for someone who has a severe case of Von Willebrand’s and why don’t more people know about the disease?
I was first introduced to Von Willebrand’s when I was eleven upon meeting Alice, who later became one of my closest friends. Over time she explained she had Von Willebrand’s disease, which she initially said meant her, ‘blood doesn’t clot properly’ meaning even a paper cut would cause a lot of blood-shed over a long period of time. As I became closer with Alice, I learnt just how irritating the disease was, as she missed days of school to go to St George’s Hospital (the only hospital that understood the condition) trying to find medication that would speed up the clotting process. Although I’m no expert on the disease, I am aware that not many people know of the disease and awareness should be more widespread, and hopefully this article and interview with Alice will place a little bit of light on the genetic disorder.
There are three types, 3 being the highest form of severity. What type do you have?
Alice: Type 2
So, what are some of the limitations to the disease, i.e. jobwise or sport-wise?
Alice: You can’t join the army, or anything like that as it’s too risky. As for sport-wise, it became a bit of an issue when I did cheerleading because I was a flyer and I would have to take extra precaution. One time I banged my head and it was vital I went to hospital in case of internal bleeding.
How do people become aware of the disease in that type of situation?
Alice: I have a card which alerts people to the problem, and my mum and brother have VWD so they are experienced in dealing with situations when I injure myself.
Explain some problems with medication you face with VWD
Alice: Well, I must be careful because I can’t take medications that will thin my blood, but I usually take Tranexamic Acid and Desmopressin which I only use in bad cases; basically, it’s what I inject myself with to help with the clotting. But it’s relatively new so my local GP was unaware of why I was taking Desmopressin for it and had to look it up. In the past I have had blood tests to try out new medication but those are the only two that worked for me.
Why don’t you think more people know about VWD?
Alice: Saint George’s was pretty much the only place that knew what I was talking about so that’s the only place I go for VWD related issues. I guess many people go undiagnosed as type 1 isn’t that severe so maybe that’s why. I really believe it should be something that more people know about considering it’s so common and it’s good to raise awareness about it as much as you can.
Emily Cook
Reigate College
