Hemophilia

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Are there any severe hemophilia A women out there?

Are there any severe hemophilia A women out there?

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.

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A MyHemophiliaTeam Member said:

I have a niece who has mild hemophilia factor 8 she's in her late twenties and has 3 children, with one son who also has factor 8 deficiency.

posted 9 months ago
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Is there anyone that would recommend a supplement insurance for copay and etc.?

Is there anyone that would recommend a supplement insurance for copay and etc.?

Looking for help with copay and supplement insurance similar to Aflac or etc.? Anyone have any suggestions out there? Thanks

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A MyHemophiliaTeam Member said:

My State has a hemophilia program sign up every year.

posted 11 months ago
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I am pregnant and have a Factor 7 deficiency. Any Factor 7 ladies have advice for a safe pregnancy and delivery?

I am pregnant and have a Factor 7 deficiency. Any Factor 7 ladies have advice for a safe pregnancy and delivery?

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A MyHemophiliaTeam Member said:

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… read more

posted 11 months ago
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Why no blood testing????

Why no blood testing????

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?

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A MyHemophiliaTeam Member said:

Same here

posted 10 months ago
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How is ankyloglossia managed for an infant's feeding if a bleeding disorder is diagnosed?

How is ankyloglossia managed for an infant's feeding if a bleeding disorder is diagnosed?

Would cauterization be the procedure to get the baby's tongue in milking condition?

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A MyHemophiliaTeam Member said:

Depends on the severity of the structure. A lot of MDs feel that no intervention is really needed

posted 6 months ago
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Is ok to use a topical anti inflammatory?

Is ok to use a topical anti inflammatory?

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A MyHemophiliaTeam Member said:

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… read more

posted 11 months ago
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Need help finding others with the same very rare coag profile

Need help finding others with the same very rare coag profile

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???

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A MyHemophiliaTeam Member said:

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 read more

posted 12 months ago
3 medium

I am wondering about fatigue with mild VWs.

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

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A MyHemophiliaTeam Member said:

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

posted 5 months ago
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