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 6 months ago  

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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?

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  

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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 7 months ago  

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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???

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  

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

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  

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

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A MyHemophiliaTeam Member said:

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

posted 19 days ago  

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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

A MyHemophiliaTeam Member said:

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

posted 19 days ago  

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Has anyone been told they have microbleeding in the joints?

What is protein c defecasy and protein s defecasy

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A MyHemophiliaTeam Member said:

I will be too i also have protein s defecasy

posted 9 months ago  

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What is protein c defecasy and protein s defecasy