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Real members of MyHemophiliaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
173 questions
Intching, Pins And Needles On Face And Head
A MyHemophiliaTeam Member asked a question 💭

I’ve been having pins and needles and itching on my face and head from taking norco and methadone to manage my pain. Doesn’t anyone have a way to cope with it or any other information. I’ve tried other pain killers and can’t tolerate them as well as I do the opiates. I also smoke pot at night to deal with neuropathy and anxiety etc.

A MyHemophiliaTeam Member

Certainly sounds very similar to my own, however, I have hemophilia factor VIII deficiency, severe...long winded way of saying that I have had problem which have resulted in my left knee being fused… read more

posted September 19, 2020
Whats The Best Healthcare Coverage Plan For Hemophiliacs If You Are Not Employed?
A MyHemophiliaTeam Member asked a question 💭

My current situation is that I am 28 years old and am about to start medical school in a state outside my own (I am a Minnesota resident and will be going to Virginia for school). Since I am over 26, I can not enroll under my parents and I also will not be working and the school does not provide insurance. This leaves me with finding private healthcare coverage. Has anyone else dealt with a situation similar to this? I am afraid of the costs and the difficulty of living out-of-state which might… read more

A MyHemophiliaTeam Member

Check for MarketPlace plans under the Affordable Care Act

posted March 19, 2023
Has Anyone Heard Or Been Told That You Cannot Take Any Omega Oil Supplements If A Vonwillebrands Patient ?
A MyHemophiliaTeam Member asked a question 💭

I have been told that taking omega oil supplements could be very dangerous as I have Vonwillebrands. Has anyone else heard or been told this?

A MyHemophiliaTeam Member

I was told by my daughters’ Hematologist that they couldn’t have anything with fish oil because it could thin their blood. Their bleeding disorder isn’t Vonwillebrands, but I would assume this would… read more

posted November 16, 2021
How Do You Deal With People Overreacting To Bruises?
A MyHemophiliaTeam Member asked a question 💭

I bruise extremely easy with my May-Hegglin. Many times I have no clue what even caused the bruise. I like to wear skirts, dresses and shorts, but lately I dread wearing them because of my bruises and the reaction I get from others. I know I shouldn't care, but I don't want people to think I am abused either.

A MyHemophiliaTeam Member

Be honest with people about your condition and how it causes bruising, often without you knowing the cause.

posted March 19, 2023
Do Any Of You With Vwd Have Extreme Fatigue,joint Pain And Burning?
A MyHemophiliaTeam Member asked a question 💭

I can't seem to get enough sleep anymore. Somedays my joints hurt so bad I can hardly move and I am experiencing a terrible burning sensation around different joints when I move them. The most recent one is next to certain areas along my spine. My VWD is mild but this all worries me since it is happening more frequently.

A MyHemophiliaTeam Member

Sounds like a joint bleed to me I have a target joint and that’s how it feels when it begins. Or to me it does.

posted May 3, 2023
Have Any Women With Mild Hemophilia A (or "symptomatic Carrier") Had Issues With Bruising With Mammogram?
A MyHemophiliaTeam Member asked a question 💭

I am scheduled for diagnostic mammogram. I have factor VIII levels in the low 40% and tend to bruise easily. Worried about the mammogram causing significant bruising so am wondering about the experiences of others.

A MyHemophiliaTeam Member

I’ve had a few and never had a problem

posted April 2, 2022
Can Anyone Tell Me About The Drug Wilate Used To Treat VWD
A MyHemophiliaTeam Member asked a question 💭
A MyHemophiliaTeam Member

I take It. It’s factor 8 and has less things in it to react to is what I was told. I don’t feel as sick after taking it. Not sure what else you wanna know about it.

posted October 5, 2022
Surgery For Hemophilia Carriers
A MyHemophiliaTeam Member asked a question 💭

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

A MyHemophiliaTeam Member

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.

posted March 19, 2023
Big Bruise To Forehead
A MyHemophiliaTeam Member asked a question 💭

Hi, my 3 year old son has moderate hemophilia, level 3.

He had a nasty bruise on his forehead that has swelled up to a golf ball size, and has rebled a little.

Apart from trans acid, is there anything any of you guys have used to stop the bleeding and support recovery?

We are very worried

Thanks so much

David

A MyHemophiliaTeam Member

Is you son being treated by a Hemophilia Treatment Center(HTC)? You should check with the hematologists at the HTC nearest to you.

posted March 19, 2023
What Could Be Wrong With Me?
A MyHemophiliaTeam Member asked a question 💭

I noticed some petechiae spots on my abdomen and legs in May. The ones on my abdomen started to spread and get lighter in color in the center. One doctor said that I had ringworm. I started using Lotramin. The spots continued to spread. I went to see a different doctor. He thought that it might be Lupus, but my ANA was negative. My aPTT was 34, which was said to be high. My Factor VIII Activity was 37%. My von Willebrand Factor (vWF) Ag was 81%, and my vWF Activity was 63%. The doctor ordered… read more

A MyHemophiliaTeam Member

Still no answers. The hematologist is sending me to a rheumatologist now.

posted August 8, 2019
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