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My six-year-old daughter has severe hemophilia A, which we all know is extremely rare. So I’m looking to connect with women who are in the same position. As my daughter gets older, she’s starting to ask more questions about her condition and I would love to be a bit more prepared to answer her questions, and share experience from those with first hand experience managing hemophilia as a woman.
My aunt was diagnosed in the 1950’s with moderate Factor VIII deficiency. She is 70 years old now. With the treatments that are currently available your daughter should do very well. You should get… read more
Looking for help with copay and supplement insurance similar to Aflac or etc.? Anyone have any suggestions out there? Thanks
I believe there is a hemophiliac organization in all states that can help with payments and other things
You are very welcome! I did have a natural birth but the pain was rough, they wouldn’t give me anything for the contractions. Also, for post birth, make sure they do a follow up on your levels. My… read more
Since 1996 I have only had my blood timed to see how long it takes to stop bleeding. Should'nt the doctors have done other tests to find out about factors and other things?
When I was diagnosed back in 1987, I had several bleed time tests done. Since then I have been told that they no longer do that type of test. I was not given a reason why.
Would cauterization be the procedure to get the baby's tongue in milking condition?
Depends on the severity of the structure. A lot of MDs feel that no intervention is really needed
I use Diclofenac cream with no problems. I can take small doses of NSAIDS infrequently, but they don't "sit well" with my guts...and they REALLY cause bleeding/bruising problems for me. (I still use… read more
Recently encountered a 6 year old kid that has the following coagulation profile...Severe F8 deficiency, very mild F9 deficiency and a low titer F8 inhibitor...does anyone else have the same profile???
My son is 6mo old with f8 severe. I am 30 with f8 moderate, low vw but so far he has no inhibitor but i have no inhibitor perse but no tolerance to stimate as it was no longer effective.
Isn’t pain relative to the person that feels it. Since I’ve grown up bleeding I don’t try to compare to a “normal” who hasn’t had regular bleeds. I only compare my pain to myself. So if you are… read more
Yes. I have type 1 mild. I have had to have both ankles fused a total right knee and my elbow has had radio active isotopes injected in to it. I get them in my hands too.
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 average person. I always… read more
I get extremely fatigued even tho I’m mild...also looking for fatigue relief
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