Hemophilia

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4 medium

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

posted 11 days ago by A MyHemophiliaTeam User

I'm on medicare and using Physician Mutual as Medigap and its been great so far. I'm paying 160.00/ month. I'm in the dallas/ft. Worth, tx area. My… read more

posted 5 days ago
7 medium

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

posted 15 days ago by A MyHemophiliaTeam User

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 12 days ago
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 18 days ago by A MyHemophiliaTeam User
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 27 days ago by A MyHemophiliaTeam User
5 medium

Is ok to use a topical anti inflammatory?

posted 27 days ago by A MyHemophiliaTeam User

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 1 day 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 about 1 month ago by A MyHemophiliaTeam User

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 25 days 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 about 1 month ago by A MyHemophiliaTeam User

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 21 days ago
9 medium

Is illness Linked to Von willer brands?

My daughter has been poorly since the beginning. She's never been to the toilet properly, picked up every illness and never slept. It took a year for me to get taken seriously by the doctors which led to a hospital referral and to be told she was severely anemic. She was very close to blood transfusion and had to undergo blood tests every couple of days.
Since then she's had multiple blood tests to be told iron levels aren't perfect but She no longer needs iron supplements.… read more

posted about 2 months ago by A MyHemophiliaTeam User
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 2 months ago by A MyHemophiliaTeam User

I think so. I have TERRIBLE joint degeneration, for being my age (drs always tell me so). As an aside to you, though, about the bleeds under the… read more

posted 1 day 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 2 months ago by A MyHemophiliaTeam User
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