Hemophilia

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4 medium

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

2 mini
A MyHemophiliaTeam Member said:

My State has a hemophilia program sign up every year.

posted 9 months ago
7 medium

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?

3 mini
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 10 months ago
2 medium

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?

2 mini
A MyHemophiliaTeam Member said:

Same here

posted 9 months ago
0 medium

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?

1 mini
A MyHemophiliaTeam Member said:

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

posted 5 months ago
5 medium

Is ok to use a topical anti inflammatory?

Is ok to use a topical anti inflammatory?

1 mini
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 9 months ago
4 medium

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 10 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

6 mini
A MyHemophiliaTeam Member said:

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

posted 3 months ago
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