Hemophilia

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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???

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 over 1 year ago

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

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 over 1 year ago

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

A MyHemophiliaTeam Member said:

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

posted 10 months ago

How bad is it to have Von Willebrands and a platlete disorder while delivering a baby?

How bad is it to have Von Willebrands and a platlete disorder while delivering a baby?

I have Vonwillebrands so does my daughter who is pregnant but she also has a platelet disorder on top of the Von Willebrand's when I was pregnant my doctor said the Von Willebrand's gets better when you're pregnant but when my sister had both her babies she also has a platelet disorder on top of the von Willebrand's she almost died from bleeding I was told von Willebrand's and platelet disorder during pregnancy makes it worse… read more

A MyHemophiliaTeam Member said:

Thank you!

posted over 1 year ago

My Nose Bleed lasted hours, what works best? VWD

My Nose Bleed lasted hours, what works best? VWD

I regularly get them on my left side and have had it cauterized three times. I use a Tampon to help for a clot and stop it but this was a five tampon event in my nose over just two hrs. I also just let it run in the sink for awhile out of frustration! Should I use the DDAVP NOSE spray in this case??

A MyHemophiliaTeam Member said:

Nasal QR is an over the counter Alternative and cheaper than ddavp

posted 12 months ago

How do I add someone how has Hemophilia.

How do I add someone how has Hemophilia.

A friend, he's on facebook I would like to mention to him about this site. I don't think he knows about it and I would like to send him a link or a request some how, help please! HELP ME! PLEASE! lol

A MyHemophiliaTeam Member said:

posted over 1 year ago
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