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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.
183 questions
I Am A 62 Year Old Senior Who Needs To Have 13 Teeth Removed....
A MyHemophiliaTeam Member asked a question 💭

I am looking for an oral surgeon familiar with Hemophilia in the Titusville/Orlando, Florida. I am a Hemophlia patient (Factor 11) def. and have a tendency to bleed alot.. My dentist said I would need a transfusion before, and one unit after the procedure. So we are talking about a two-three day hospital trip for me. So far, I have no recommendations for anyone close by. Not sure what to do, as the work needs to be done asap because of constant infections.

Any advise would be appreciated… read more

A MyHemophiliaTeam Member

You absolutely need to contact the closest Hemophilia treatment center. I would not ever do oral surgery without the their involvement. I have had 3 surgeries all went well. I have Von Willebrands.

posted January 28
Can Any Of You Recommend A Great Hematologist In The San Diego Area?
A MyHemophiliaTeam Member asked a question 💭
A MyHemophiliaTeam Member

Check with the Hemophilia Treatment Center at University of San Diego Medical Center

posted March 19, 2023
My Daughter Is 12 And Has Type 1 Von Willebrands. Anyone Else Have Young Ones With That?
A MyHemophiliaTeam Member asked a question 💭

Anyone else have young kiddos with this?

A MyHemophiliaTeam Member

My daughter has Type 1 we haven’t had any serious incidents thank God. I’m type 3 and it’s a whole different world. My niece nephew sister and mom all have type one and they are all relatively normal… read more

posted December 21, 2022
Joint Bleeds
A MyHemophiliaTeam Member asked a question 💭

I have von Willebrands disease. I really don’t know much about it. I was told its a relatively minor case but that’sall i know. I don’t know what to expect with this disease and have a lot of body pain and headaches. I’m not sure if any of this is from vwd or if it’smy other conditions.

A MyHemophiliaTeam Member

I have VWD and have always been told it’s a Factor VIII deficiency.

posted April 29, 2023
Does Anyone Else Have Non Itchy Red/purple Dots. Always There.
A MyHemophiliaTeam Member asked a question 💭

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

A MyHemophiliaTeam Member

Keep your feet elevated.

posted October 5, 2022
Baby Clotting Each Time Blood Is Drawn
A MyHemophiliaTeam Member asked a question 💭

My son hasn’t been tested for Factor V Leiden or any other clotting disorder... well he has been...but it was after a blood transfusion. 🙄

When he was 2 months the hospital struggled to get his PICC line in.. (kept clotting)

Today he is 10 months and needed to have blood work done.. but they couldn’t get a lot because he kept clotting..

I guess my question is... is this a sign that he would most likely have a clotting disorder?

TIA

A MyHemophiliaTeam Member

Better to find a hematologist to ask that question

posted September 17, 2020
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
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