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7 medium

Anyone else have a qualitative platelet disorder and factor 1 hemophilia?

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?

posted 4 months ago
3 medium

I am wondering about fatigue with mild VWs.

My VW is mild, so I have not always given it the credit it deserves in causing complications in my life. But I was diagnosed with idiopathic hypersomnia (non REM narcolepsy) several years ago. I found out a year and a half ago I was misdiagnosed and had iatrogenic hypersomnia caused by an antidepressant. I thought I was completely cured when I stopped taking that medication, and my improvement really is a miracle. But I have always been a little more fatigued than the… read more

posted 9 months ago
A MyHemophiliaTeam Member said:

I get extremely fatigued even tho I’m mild...also looking for fatigue relief

posted 19 days ago
1 medium

Anyone have a very low platelet count with VW type 2b

I'm trying to find out if anyone with vW type 2b has constantly low platelet counts that doctors cannot explain.

posted almost 2 years ago
7 medium

NOWIQ and octapharma

got a packet from the non-profit chapter about this company and their product. was just wanting to see the reviews from people that i have connected to or a support group that i am in.

its derived from human based cells, from what i am gathering. just not sure on it as last i remember when they had tried something along that line the AIDS and Hep C outbreak occurred.

posted about 2 years ago
1 medium

I am interested in finding out if anyone with vW type 2b ever developed low platelet counts over time?

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… read more

edited, originally posted almost 3 years ago
9 medium

Does anyone else have side effects from Amicar?

I have been on Amicar most of my life and dealt with the side effects, but they seem to be affecting me more lately. I've had nausea and vomiting, and i get really dizzy and ligt headed to the point of fainting. The worst though is along with that, I get super overheated. Does anyone else have these side effects? It's gotten so bad I have even considered trying to switch to Lysteda in hopes it won't have the same effects. Anyone have experiences with switching?

edited, originally posted about 2 months ago
A MyHemophiliaTeam Member said:

I've had similar side effects (nausea, dizziness) with Amicar, which I've used after invasive dental procedures (extractions, other oral surgery). It… read more

posted about 2 months ago
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