Hemophilia

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2 medium

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?

posted 8 months ago
A MyHemophiliaTeam Member said:

Same here

posted 6 months ago
0 medium

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?

posted 8 months ago
A MyHemophiliaTeam Member said:

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

posted 2 months ago
5 medium

Is ok to use a topical anti inflammatory?

posted 8 months ago
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 7 months ago
4 medium

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???

posted 8 months ago
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 8 months ago
1 medium

I'm wondering does hemophilia cause us to have more intense pain than normal people???? My pain has become almost unbearable at times.

posted 9 months ago
A MyHemophiliaTeam Member said:

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… read more

posted 8 months ago
6 medium

I have von Willebrands. I have spontaneous bleeds under the skin. I also have joint pain. Do VWD patients bleed into their joints?

posted 9 months ago
A MyHemophiliaTeam Member said:

I have joint bleeding quite often...they cause joint deformities in my hands as well

posted 19 days 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
3 medium

What is protein c defecasy and protein s defecasy

posted 10 months ago
A MyHemophiliaTeam Member said:

I will be too i also have protein s defecasy

posted 9 months ago
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