Thrombocytopenia is a condition that occurs when the platelet count in your blood is too low. Platelets are tiny blood cells that are made in the bone marrow from larger cells. When you are injured… read more
I have Vonwillebrands so does my daughter who is pregnant but she also has a platelet disorder on top of the Von Willebrand's when I was pregnant my doctor said the Von Willebrand's gets better when you're pregnant but when my sister had both her babies she also has a platelet disorder on top of the von Willebrand's she almost died from bleeding I was told von Willebrand's and platelet disorder during pregnancy makes it worse my daughter's Dr doesn't seem to be worried about it but I am and I'm… read more
I have vwd with platelet and factor VIII ISSUES. I have two children and only had problems after the birth of second. I bled for a month afterwards until they gave me fVIII infusions. That seemed to… read more
My son was diagnosed at age 6 with a qualitative platelet disorder. His platelets are missing the mechanism that causes them to stack. I recently decided his medical records and noticed that when they were doing his blood work for the diagnosis his fibrinogen level was too low also but they never told me that. Could this mean that he is also a factor 1 hemophiliac... or am I over reacting?
I have von Willebrand’s Disease type 2b. Since I had a partial hysterectomy my platelets have been extremely low (as low as 23000). I need a second opinion on why my platelets will not increase. Can anyone recommend a very very good hematology in NYC.
Check with the Hemophilia Treatment Centers at Mount Sinai or Cornell Medical Center
For the last couple of months, I've experienced periodic extreme fatigue and I get petechiae (small red dotted rash) on my legs and chest. Are these typical symptoms any of you have experienced with your Von Willebrand Disease? What do you do about it?
I am always tired and have petechiae in random places, not to many, they are on my chest and legs. Should I worry?
Over approximately the past 10 years, my dad, who has von Willebrand's disease type 2b, has had platelet counts at about 25-35,000. The normal low for platelet counts is about 150,000. This is dangerous because the hematologists are afraid to do any procedures (knee surgery) because of this. The only medication that he can take so far is Humate-P and they are afraid to give him that since the platelets will raise but not at the same rate or safe rate as the vW factor.
He has had bone marrow… read more
I'm trying to find out if anyone with vW type 2b has constantly low platelet counts that doctors cannot explain.
Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease
My whole life I have had horrible cycles! They last anywhere from 12- 20 days at a time. And they were every 3 weeks when I was younger. Now I’m in menapause(53 yrs old) and I only do it every 3 mos… read more
I had TTP in 1992, my platelets were at 9000 and I almost didn't make it ,over 20 plasmapheresis exchanges, my port had to switched out because it malfunctioned ( thank god my husband noticed A change… read more
I am looking at starting a Rx called Nuedexta. It's the one and only med approved for the condition I'd be treating, but it can lower platelet count. My VW's is mild... this condition I'm looking to treat is not... how do I go about knowing if it is safe for me? I've had some incompetent Drs in the past and will not trust any Dr blindly if I can research too.
Very helpful! Thanks!