So here’s part 2 of our discussion from last week about whether VWD should be von Willebrand disorder or disease. We’ve gotten responses to our social media posts almost exclusively in favor of disorder!
But my former co-author, the late Renée Paper, had a point to make in 2002 when we first considered making a ruckus to change the name legally. In the first edition of our book, A Guide to Living with von Willebrand Disease, she wrote:
“For a number of years, I have heard from various people in the bleeding disorders community that the name von Willebrand disease (VWD) should be changed to von Willebrand disorder. I hear the same arguments that Laurie has made. Disease is a scary word, disorder is not. The word disease has a negative effect on a child’s self-esteem. Insurance companies are more likely to discriminate against someone with a disease rather than a disorder. Hemophilia is called a blood disorder, why isn’t VWD?
“As an emergency room nurse, I agree that parents have influence over their children. I also think that parents influence their children more with their attitudes than with their words. I believe that a child will accept the VWD diagnosis in a manner similar to that of the parent. If the parent accepts the
diagnosis and does not make a big deal over it, so will the child. If the parent has an intense negative reaction, it is likely that the child will react the same way. I believe that insurance companies do not care what it is called. The name of the disease is less likely to affect payment or coverage decisions than the symptoms and cost of care. Whatever it is called, von Willebrand disease, von
Willebrand disorder, von Willebrand syndrome, or von Willebrand’s, the symptoms are exactly the same and so is the cost for treatment.
“If VWD were new on the scene today and I had to name it, I would call it a disorder. But VWD was named about 70 years ago, and since then it has appeared everywhere as disease. Do we really need to draw this fine line now?
“The most important argument against changing the name is that VWD affects millions of people worldwide, yet it is grossly underrecognized and underdiagnosed. We need to devote all our energy and resources to educating others about the disease and its symptoms and to providing appropriate
laboratory evaluation and treatment. A name change would involve a vast amount of money and time. New educational materials would have to be printed, and the FDA would need to approve new labeling on medicines to treat it. It is no simple task to change the name.
“Around the world, medical literature universally calls it von Willebrand disease or VWD. For consistency, we should, too. Let’s not muddy the waters now when we are working so hard to spread the word and increase awareness. Money would be better spent by focusing on the big picture, that is, ending the suffering and isolation felt by the many people worldwide affected by VWD.
Renée Paper, RN
So, what do you all think? The Irish Haemophilia Society has decided to call it a disorder, because its members have requested it. Is it time for us too, to update the name to disorder?