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    • #11365

      Being a woman with hemophilia is complicated. Lyonization gives us factor levels less than normal. But, our bleeding patterns and severity often do not match our factor levels. Are you a mild who bleeds more than expected? Have you ever been told you would be ok, and then you bleed, anyway? How do you feel about the “Treat the Level, Not the Bleed” slogan? What are your thoughts?

    • #11368
      Shellye Horowitz
      Keymaster

      Argh! I HATE it when doctors look at our levels instead of our bleeding tendencies. I know they say they treat bleeds, but it really is dependent on the individual treater. When I finally found someone who believed I was bleeding and treated me accordingly everything changed. I bleed much less, am more active and have less pain….. I hope this happens for others too….. we still need a lot of advocacy!

    • #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.

    • #11409
      Shellye Horowitz
      Keymaster

      So true. And how are they to know about our bleeding tendencies? I think blanket statements of how a person is going to bleed (based on their factor level tests) are dangerous, at best…. but can have very detrimental consequences for women struggling to access care.

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