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 5 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 6 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 6 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:

Anybody else have problems like this? I have an older Brent’s disease, and highly suspected Ehlers-Danlos syndrome?

posted 5 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

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 7 months ago  

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What is protein c defecasy and protein s defecasy

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

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A MyHemophiliaTeam Member said:

Thank you!

posted 8 months ago  

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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??

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A MyHemophiliaTeam Member said:

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

posted 21 days ago  

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