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    • #11350
      Shellye Horowitz
      Keymaster

      I cannot stand the term “carrier” unless a woman really just carries hemophilia and has no symptoms whatsoever. If a woman has any symptoms, she needs and deserves a proper hemophilia diagnosis. I hope the medical community catches up soon. At least some doctors and HTCs are getting it. What amazes me is that the CDC and NHF and WHF all have guidelines saying women should get the hemophilia label… so what is the holdup? Are old habits hard to break?

    • #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.

    • #11408
      Shellye Horowitz
      Keymaster

      You know, this is an interesting dilemna for sure! Some women are really needing to shed the symptomatic carrier label because they are mild hemophiliacs, and then this other group is looking for validation with higher numbers…. I wish there was a way to distinguish the issues all struggle with while simultaneously removing that label! I wonder if we need all new labels altogether….

    • #11309

      “Carrier” is often used to describe women with hemophilia mutations.  Some of us dislike the use of carrier. How about you? Is your diagnosis “carrier” or “Symptomatic carrier” or “asymptomatic carrier?” How do you feel about the language used to describe women with an hemophilia mutation?

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