Hi, I’m a 51-year-old woman with Glanzmann’s thrombasthenia. I was diagnosed at 6, after the death of my older brother, who had the same condition as me but was mistaken for hemophilia.
Quite quiet childhood with various hematomas throughout the body. At 13, I started hospitalization due to bleeding from menstruation. Endless transfusions and tranex with poor results until I started taking hormones. I was lucky because although the doctors had advised me not to become pregnant, I went on, and now I am the mother of a beautiful 25-year-old girl.
Cesarean delivery was a tragedy; I was dying of internal bleeding. Luckily with platelet transfusions for 13 days, it stopped. Then I survived four undiagnosed gastric bleeds, several times from nose bleeds and uterine bleeds despite hormones. All of these episodes were treated with platelet transfusions.
The last gastric bleeding dates back to 5 months ago. Thanks to this group, I could impose myself and have the Novoseven injected into me at the right doses … and it seems to have worked!
Unfortunately, having received so many platelets, I have developed some antibodies, and knowing that this drug can help gives me confidence. Despite these episodes, I have never avoided doing many things .. as a young girl, I also rode a bike! Of course, I would not do it now. I have always done sports. I travel. I was, and I am, very positive and fatalistic. Life is one; we have touched this. Let’s live it to the fullest .. a hug to all of you ❤❤