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 9 year old daughter who is mild hemophilia a.

posted about 15 hours ago  

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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 about 2 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?

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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 3 months ago  

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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 about 1 month 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?

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 2 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 3 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 3 months ago  

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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

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

A MyHemophiliaTeam Member said:

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 2 months ago  

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