Tuesday, December 13, 2011


Jonathan, my 15 year old was just diagnosed recently with a disease that I had never heard of, though I have learned that among bleeding disorders, it is fairly common. Several years ago, Jonathan began having frequent nose bleeds. I'm not talking a little trickle of blood....I mean his nose would drip, and the bleeding would last quite a while. So we took him to see an ENT (ear, nose, throat doctor). They cauterized some of the larger blood vessels in his nose, and for a while, the problem seemed to go away. Then this past summer, particularly during August and the hot weather, he started having the nose bleeds again. And realize, for a teenager, this is embarrassing. One day, he called me from school and told me that he had a nose bleed that lasted all band period--we're talking fifty minutes! So I immediately called the ENT's office and got him an appointment that day with someone new to the practice. He examined Jonathan, then cauterized another blood vessel, and sent him to the lab for blood work.
On our follow up visit, they sent us to the lab to repeat one of the tests that had come back abnormal. And again, his results for clotting factor were low. We were asked if he had a family history of bleeding disorders, and I had to tell him I didn't know. Jonathan was adopted, so I had to e-mail some of our contacts with his family. We did find out there was some history with bleeding problems. So the next step was to see a hematologist. This doctor did more blood tests. We're talking six vials of blood the first visit, and then another 2 the second visit. Finally, he was diagnosed with Von Willebrand Disease. What is it?
Von Willebrand disease (VWD) is a bleeding disorder that affects your blood's ability to clot. In VWD, you either have low levels of a certain protein in your blood or the protein doesn't work well. The protein is called von Willebrand factor, and it helps your blood clot. Normally, when one of your blood vessels is injured, you start to bleed. Small blood cell fragments called platelets clump together to plug the hole in the blood vessel and stop the bleeding. Von Willebrand factor acts like glue to help the platelets stick together and form a blood clot.
Von Willebrand factor also carries clotting factor VIII (8), another important protein that helps your blood clot. Factor VIII is the protein that's missing or doesn't work well in people who have hemophilia, another bleeding disorder. VWD is more common and usually milder than hemophilia. Fortunately, if he had to have a bleeding disorder at all, it was something milder. Also, among VWD patients, there are three types. Jonathan has the mildest form....another blessing!
And another blessing of all this? We learned that because he has a bleeding disorder, he is eligible for several college scholarships. Wow! You might wonder how this is treated. After a test (yep...more blood work) to see if it would work, he was prescribed a nose spray that forces the walls of his blood vessels to release the necessary protein for him to clot. So far, we haven't had to use it. And we're hopeful that we won't. We were told it may be necessary when he has to have dental work (like the removal of wisdom teeth) or surgery.
We are thanking God that it was something treatable!

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