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Real members of MyHaemophiliaTeam 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.

Featured Q&A

Could You Share Any Dietary Changes And Tips That Have Helped With Hemophilia?

By A MyHaemophiliaTeam Member 2 answers

I Hope Everyone Has Had A Good Day!

By A MyHaemophiliaTeam Member

What’s Your Go-to Routine For Joint Health? 🦵🧘‍♂️

By A MyHaemophiliaTeam Member 1 answer

What Lessons From Your Hemophilia Experience Are You Applying In 2024?

By A MyHaemophiliaTeam Member 1 answer
200 questions

I Have Von Willebrand

A MyHaemophiliaTeam Member asked a question 💭
Macomb, MI

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

A MyHaemophiliaTeam Member

Von Willebrand Disease (VWD) is a bleeding disorder caused by a deficiency or dysfunction of the von Willebrand factor (VWF), a protein that helps blood clot. Here are some key points about VWD:

-… read more

July 28

Is It Safe To Have A Spinal? Or Would I Be Better Off Having General Anesthesia

A MyHaemophiliaTeam Member asked a question 💭
Berlin, NH

i need knee surgery, and maybe back surgery. I have a pace maker and can't have an MRI aslo, they want to inject dye into me back to see what is going on. I was told i could end up as a cripple if i bleed. Anyone know about this

A MyHaemophiliaTeam Member

GENERAL anesthesia because with a spinal you'll wake up with a headache and pain you don't want that

January 15, 2019

Does Anyone Else Have Side Effects From Amicar?

A MyHaemophiliaTeam Member asked a question 💭
Portland, ME

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?

A MyHaemophiliaTeam Member

NO ILL EFFECTS!!!

October 6, 2022

Does VwD And Anemia Go Hand In Hand?

A MyHaemophiliaTeam Member asked a question 💭
Saratoga Springs, NY
A MyHaemophiliaTeam Member

I also have vwd and get anemic easily. I am not prescribed meds and just take iron supplements when the bruising begins to show. I only have to take iron for a few days and it helps.

December 18, 2023

Has Anyone Have Prolonged Menstrual Cycles Associated With Excessive Bleeding

A MyHaemophiliaTeam Member asked a question 💭
Heislerville, NJ

Has anyone have prolonged menstrual cycles associated with excessive bleeding and been diagnosed with von willebrand disease

A MyHaemophiliaTeam Member

My whole life I have had horrible cycles! They last anywhere from 12- 20 days at a time. And they were every 3 weeks when I was younger. Now I’m in menapause(53 yrs old) and I only do it every 3 mos… read more

December 18, 2023

Anyone Else Have A Qualitative Platelet Disorder And Factor 1 Hemophilia?

A MyHaemophiliaTeam Member asked a question 💭
Lebanon, OR

My son was diagnosed at age 6 with a qualitative platelet disorder. His platelets are missing the mechanism that causes them to stack. I recently decided his medical records and noticed that when they were doing his blood work for the diagnosis his fibrinogen level was too low also but they never told me that. Could this mean that he is also a factor 1 hemophiliac... or am I over reacting?

Top Hematologist In NYC

A MyHaemophiliaTeam Member asked a question 💭
Middletown, NJ

I have von Willebrand’s Disease type 2b. Since I had a partial hysterectomy my platelets have been extremely low (as low as 23000). I need a second opinion on why my platelets will not increase. Can anyone recommend a very very good hematology in NYC.

A MyHaemophiliaTeam Member

Check with the Hemophilia Treatment Centers at Mount Sinai or Cornell Medical Center

March 19, 2023

Spontaneous Black And Blues

A MyHaemophiliaTeam Member asked a question 💭
Florida, NY

I have what appears to be blood vessels that break spontaneously in my fingers and feet. It burns for a while and then a black and blue mark appears. is this common in people with Von Willobrands Disorder?

A MyHaemophiliaTeam Member

Sounds like joint bleeds. I have it in my hands and arms and knees. But that’s exactly what happens, the burning and bruising is common with vwd usually what feels like arthritis pain follows.

December 18, 2023

Are There Any Severe Hemophilia A Women Out There?

A MyHaemophiliaTeam Member asked a question 💭
Austin, TX

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.

A MyHaemophiliaTeam Member

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

October 8, 2022

Is There Anyone That Would Recommend A Supplement Insurance For Copay And Etc.?

A MyHaemophiliaTeam Member asked a question 💭
Hobbs, NM

Looking for help with copay and supplement insurance similar to Aflac or etc.? Anyone have any suggestions out there? Thanks

A MyHaemophiliaTeam Member

I believe there is a hemophiliac organization in all states that can help with payments and other things

March 11, 2020
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