What Do You Wish Others Would Understand About Living With Hemophilia? | MyHemophiliaTeam

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What Do You Wish Others Would Understand About Living With Hemophilia?
A MyHemophiliaTeam Member asked a question 💭
posted August 19, 2017
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A MyHemophiliaTeam Member

The pain and the suffering that we have to go through. They really need more education to understand hemophilia. Even doctors don't know about hemophilia and there is lots of doctors that I have even done a short explanation of what it is. The factor does help with pain to some extent, but not totally.

posted August 19, 2017
A MyHemophiliaTeam Member

first aid kits are a must ! as are fastest route to E.R. !

posted November 7, 2017
A MyHemophiliaTeam Member

How much accompaniment really matters to the scholastically average person because of their academically ingrained self doubt and the urgency of responsiveness to medical emergencies.

posted October 17, 2017
A MyHemophiliaTeam Member

I totally agree with you about that situation, I remember what it was like as I went through school, as a youth with severe hemophilia A factor 8. I didn't start getting a descent support system for myself towards the start of high school.

Because of the individuals that took part in yoga and weight training P.E. class where able to provide a form of physical therapy and relaxation. That helped reduce the frequency of ankle bleeds and elbow bleeds. And, I stay connected with friends that I have to be able to get the support.

posted September 3, 2017
A MyHemophiliaTeam Member

I wish people would support more often than not. I mean I have been under scrutiny for my son and his bruises, as well as the medical aspect of prophy treatments and the like. It is hard on the parent or parents to have to get the judgemental looks from everyone including family.

posted August 26, 2017

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