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    • #11407

      I hate “carrier”, too! But, I recently had a conversation with a woman in the community who struggled with a label for herself. Her factor levels were above 50, and she did not want to be called a hemophiliac. She preferred carrier. I think maybe we need to be more flexible. I still cringe when someone calls one of us a carrier.

    • #11406

      I hate it too!! I also hate “you should be fine” with my level of 29. Clearly not! We have a lot of advocacy left to do, and some activism, too.

    • #11405

      If I had family history, I would have losses like most of the people with family history. I am glad I don’t. But, I wish I had at least someone else in the family (a woman) who could have told me I had hemophilia way before I was 28.

    • #11359

      I can’t trace it in my family. I am generally am considered to be a spontaneous. I had a great uncle die of a “blood disease,” at the age of 4. He probably had VWD, which I do, and my Mom and sisters, too. I think it is good to not be able to trace hemophilia, but I also think it would be amazing!

    • #11358

      I know this is stupid, but sometimes I have put off treating when I am busy with the kids, or too tired to do it. I am not allowed to be on prophylaxis, so I treat on demand. I have target joints, and I would be mad if one of my kids put off treating, but I do it anyway. My 7 year old scolds me! She helps me infuse, so I try to be a good example.

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