Von Willy Who?
By: Tracy Simon Sethman
We discovered that our son had Von Willebrand Disease because of routine blood work to check his liver function due to a medication he had been on. Our son was in grade school when he was diagnosed. Not long after seeing the hematologist he had a serious knee injury and was admitted to the hospital to have DDAVP treatment for 3 days. We were completely blindsided when the call came in explaining why he had so much bruising and complications when he had surgery at 5 1/2 weeks old. Life seemed to be turning upside down.
This all occurred in the mid 90’s and the information highway was only beginning to get going so resources were limited to what the doctor, social worker, or nurse could pass along. Next up, how do we allow our son to be “normal”, can he participate at school, can he still ride his bike? The school district decided that he should only use the elevator and was to stay inside during recess. It makes me tear up looking back now, how horrible for a young boy. Fortunately, we put a stop to this and educated ourselves and the school.
During the visits to the hematologist we had to be tested simply because as they put it… this disease didn’t fall out of the sky and land on our son. As you can imagine it turned out that my genes were the generous ones that not only affected him but my daughter and myself also. This explains the severe bleeding situations that I found myself in since I was a young child, surgery difficulties, facing death during an ectopic pregnancy that had burst. Talk about having angels at your side – I certainly have.
That was then and now life is pretty much a breeze due to the knowledge and medications. The three of us live with a nasal medication on hand for life’s bumps and bruises. If we need extensive dental care or even surgery then intravenous dosing of DDAVP is first choice for prevention. We attend the local chapter’s events, meetings, and stay informed.
Fundraising is not difficult especially when you are sincere and use a story or two of how VWD affects your entire family. Don’t think for a minute that your loved ones brush it off and aren’t concerned. Giving your friends and family information on VWD and even hemophilia is vital. Folks aren’t learning about bleeding disorders in school and it’s not even in everyday conversations. All of us have sadly had to explain to a nurse or even a doctor what VWD is. That alone has caused us to jump on a soapbox because the National Hemophlia Walk is to raise not only funds but awareness. Get informed, inform your friends and family, and fundraise. Together someday these bleeding disorders will be in ordinary conversations and ALL medical staff will know too.