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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.
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What Can We Do By Mutated Plasminogen-Aktivator-Inhibitors 1 ? In My Group Is A Young Man With This
A MyHemophiliaTeam Member asked a question 💭
posted November 29, 2022
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Is Fish Oil Supplement Okay For Factor IX Deficient? I've Read That Bleeding Could Be A Side Effect.
A MyHemophiliaTeam Member asked a question 💭
posted November 19, 2022
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Super, I Have A Good Day, A Good Week
A MyHemophiliaTeam Member asked a question 💭
posted October 28, 2022
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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

posted June 22, 2022
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A MyHemophiliaTeam Member

Once you get your meds I’m not sure what experience you’re looking for? My guy says I clot really good when medicated. I had a tooth pulled yesterday. I didn’t need the second transfusion, have no… read more

posted October 5, 2022
Can Any Of You Recommend A Great Hematologist In The San Diego Area?
A MyHemophiliaTeam Member asked a question 💭
posted March 28, 2022
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A MyHemophiliaTeam Member

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

posted March 19
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?

posted April 5, 2021
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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.

posted September 17, 2020
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A MyHemophiliaTeam Member

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

posted April 29
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

posted September 15, 2020
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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

posted September 15, 2020 (edited)
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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.

posted July 21, 2020
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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
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