Quick Links
Resources
About MyHemophiliaTeam
Powered By
I have Factor V Lieben and on Percocet for pain. I also have nerve burns done every few months to my left leg where I’ve had 3 clot. I feel every single clot. I also had to have the IVC filter… read more
Besides occasionally eating I take a daily multi-vitamin/mineral supplement as others mentioned. Also supplements like Types 1, 2 & 3 collagen for bones, joints and cartilage, L-Carnitine amino acid… read more
Gene, is the cyst causing pain or irritation? If not it might be OK to leave it for now, cosmetic issues aside. Your doc might also be unacquainted with factor replacement therapy and be afraid of… read more
Does anyone have chronic pain I have it in neck back hips knees and ankles already have had 1 total knee and 1 total hip replacement
Yes. And they just forced me to find a pain management doctor, even tho I’ve been to two pain programs. The rest, ice, compression, elevation. I used light compression socks around the house like… read more
Are there any older guys with haemophilia that are experiencing chronic pain in both elbows. Right hand small finger has pins and needles feeling?
I have pins and needles in my small finger as well as the next. Xrays shows that I have a nerve caught in the elbow joint. Got used to it after an few years. Now I have Carpal tunnel syndrome as well.
Has anyone who is a known hemophilia carrier with 50% factor levels had surgery.
My sister is due to have a knee replacement. What was your experience and what did you have to do pre surgery and post op?
Please share your experiences. Thanks
Your sister should coordinate her care with surgeon and Hemophilia Treatment Center closest to her. It may be wise to consider factor replacement therapy or at very leat Stimate.
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???
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 stimate as it was no longer effective.
Hi, I have VWD, I have had red and purple dots for at least 15 yrs. Only on my abdomen and a few on chest. There are tons of them. Some very very tiny, a few look like cherry animolas spell?? A few raised. Most flat and never itch. Never go away completely. Sometimes they seem much worse or more prevalent than other times. Like if i take ibuprofen, which I was told not to but can't help it sometimes. My hematalogist always said its from the VWD. But that was 15 yrs ago. And i can't remember the… read more
Keep your feet elevated.
I have been on Amicar most of my life and dealt with the side effects, but they seem to be affecting me more lately. I've had nausea and vomiting, and i get really dizzy and ligt headed to the point of fainting. The worst though is along with that, I get super overheated. Does anyone else have these side effects? It's gotten so bad I have even considered trying to switch to Lysteda in hopes it won't have the same effects. Anyone have experiences with switching?
NO ILL EFFECTS!!!
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.
My aunt was diagnosed in the 1950’s with moderate Factor VIII deficiency. She is 70 years old now. With the treatments that are currently available your daughter should do very well. You should get… read more