Platelet Dysfunction

Hello, I'm a 40-year-old woman who had one bout with ITP that nearly killed me in 1996. I have had no reoccurances, however, I have been diagnosed as having a platelet dysfunction and borderline factor VIII Von Willebrand disease. I would like to get in touch with other people who have had similar experiences.

Laura

Laura,
I'm 52 and I've had conflicting Von Willebrand tests. Approximately 7 years ago, I saw a OB/GYN that ordered a Von Willebrand panel after hearing I had been hospitalized for menstrual hemorrhaging beginning at age 13 and the last instance in my early 40's resulted in an emergency ablation to stop the bleeding.I had always been told that the bleeding was due to some hormonal imbalance.
The first two VWB tests indicated I had either type II (platelet) or acquired Von Willebrand and I was referred to specialist. Hematologist ran a panel along with a lot of other blood tests and said it was not Von Willebrand, but the test weren't normal either. They thought perhaps aspirin or NSAID use was giving false reading and over the next several months I stopped any aspirin, or NSAID use, but platelets still tested abnormal for function but counts were okay. I had chronic infection markers in the blood, but I stopped going to specialist when they couldn't figure out what was going on. BTW all three of the Von Willebrand tests were done by Quest Diagnostics, but it's not clear they were the same lab, or just the same company. About a year later my Chiropractor who is also a radiologist took some blood and figured out I had a problem with gluten. Once I started gluten-free diet my health improved and I just figured it was the Gluten reaction causing the false VWB tests. Then in February this year I was diagnosed with ITP after petechia and bruising appeared on limbs and torso and CBC showed platelet count of 3K.
As I recall, you might check with CSL Behring who publishes materials and makes treatments relating to Von Willebrand, they may sponsor support group specific to Von Willebrand disease.
Deb