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Do You Know Your Limit
A MyHemophiliaTeam Member asked a question 💭

Do you ever push yourself through a bleeding episode without infusing I do and it's actually not that bad once the bleeding has calmed down and gone away I hate needles is there any advise for this

A MyHemophiliaTeam Member

I would strongly discourage trying to push through a bleed and not infuse. Especially if it is in any major joint. You will definitely pay for it when you get older and you develop severe arthritis… read more

If Possible, Have Your Child Attend A Hemophilia Summer Camp To Meet Others With Our Condition, Learn Basic Facts And Build Community..
A MyHemophiliaTeam Member asked a question 💭

Nowadays in countries with advanced medical care, many hemophiliacs never learn enough about our condition--about self-care and prevention of injury. It is critical that youngsters learn to avoid joint problems that can linger a life-time and cause chronic pain, plus the reasons for and importance of treatment. Not every young man needs to play tackle football or climb mountains. Encourage reading and development of positive social skills, things we all need in life.

Do Any Of You Lovely People Suffer From Fatigue?
A MyHemophiliaTeam Member asked a question 💭
A MyHemophiliaTeam Member

Yes, I’m severe fXI and my fatigue is a daily thing but it’s made worse from the cold. Best thing is to take more time for yourself and caffeine aha

Hi Team, This MyHemophiliaTeam What Kind Of Purpose Is Stated, For Helping The Member With Hemophilia ?
A MyHemophiliaTeam Member asked a question 💭
How Bad Is It To Have Von Willebrands And A Platlete Disorder While Delivering A Baby?
A MyHemophiliaTeam Member asked a question 💭

I have Vonwillebrands so does my daughter who is pregnant but she also has a platelet disorder on top of the Von Willebrand's when I was pregnant my doctor said the Von Willebrand's gets better when you're pregnant but when my sister had both her babies she also has a platelet disorder on top of the von Willebrand's she almost died from bleeding I was told von Willebrand's and platelet disorder during pregnancy makes it worse my daughter's Dr doesn't seem to be worried about it but I am and I'm… read more

A MyHemophiliaTeam Member

I have vwd with platelet and factor VIII ISSUES. I have two children and only had problems after the birth of second. I bled for a month afterwards until they gave me fVIII infusions. That seemed to… read more

Factor 9 Replacement ?!
A MyHemophiliaTeam Member asked a question 💭

What are the replacement to the factor 9 if it isn't available?!We have been suffering from the lack of factor 9 in Jordan since October 2022!

A MyHemophiliaTeam Member

You can reach out to “save one life” or a manufacturer to get factor

I Live In An Area Of 330,000 People. I Can’t Find A Surgeon To Remove A Cyst. What Do You Recommend?
A MyHemophiliaTeam Member asked a question 💭
Do You Suffer From Arthritis As A Result Of Bleeds? If So, What Treatment(s) Do You Use?
A MyHemophiliaTeam Member asked a question 💭

I have severe arthritis in both of my ankles. I use, Celebrex and an AFO brace.

A MyHemophiliaTeam Member

I have severe arthritis in my knee because of repeated bleeds and had a could have radioactive synovectomys which have just finished my knee off. On celecoxib, txa and 2000 daily benefix

The Benefits Of Medical Marijuana
A MyHemophiliaTeam Member asked a question 💭

I've been reading a lot about the benefits of medical marijuana with people with hemophilia. Can anyone give me any insight

A MyHemophiliaTeam Member

Thanks !!

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.