Hi Anon...I can only imagine what it must have been like to receive a diagnosis of vWD, especially when you aren't able to find any information out there to help. My niece has a very rare autoimmune disorder (only 500 children worldwide are affected) and we've faced the same thing as a family so I can empathize completely.
The article above only touches the high points of vWD. In researching for the article, I found a great deal of information at both the National Hemophilia Foundation and the National Heart Lung and Blood Institute. If you follow the links above, you'll find a great deal more information on vWD than what I was able to present in this article.
I believe that knowledge is a powerful thing when it comes to making medical decisions. I was fortunate enough to have a doctor that insisted that I educate myself and participate in the decision making process in my own care. Being able to talk to the doctor intelligently and present him with information has transformed my approach to my personal healthcare. I encourage you to do the same in managing your vWD.
You may already be doing this but one of the things that I recommend is to do an internet search at least once a quarter to see what is new on the horizon for your disease. Many of the medical and scientific journals publish quarterly and this is a good way to get the latest breaking news and information on research and possible new directions in treatment options. The internet has really been invaluable in giving the average person like you and I access to a wealth of information.
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Hi Anon...I can only imagine what it must have been like to receive a diagnosis of vWD, especially when you aren't able to find any information out there to help. My niece has a very rare autoimmune disorder (only 500 children worldwide are affected) and we've faced the same thing as a family so I can empathize completely.
The article above only touches the high points of vWD. In researching for the article, I found a great deal of information at both the National Hemophilia Foundation and the National Heart Lung and Blood Institute. If you follow the links above, you'll find a great deal more information on vWD than what I was able to present in this article.
I believe that knowledge is a powerful thing when it comes to making medical decisions. I was fortunate enough to have a doctor that insisted that I educate myself and participate in the decision making process in my own care. Being able to talk to the doctor intelligently and present him with information has transformed my approach to my personal healthcare. I encourage you to do the same in managing your vWD.
You may already be doing this but one of the things that I recommend is to do an internet search at least once a quarter to see what is new on the horizon for your disease. Many of the medical and scientific journals publish quarterly and this is a good way to get the latest breaking news and information on research and possible new directions in treatment options. The internet has really been invaluable in giving the average person like you and I access to a wealth of information.
I wish you great health. Mary
January 18, 2010 - 3:00pmThis Comment
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