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    • #11843
      Milos
      Participant

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      <p class=”_1qeIAgB0cPwnLhDF9XSiJM”>Hi,
      I am 62 years old. I suffer from severe hemophilia A. On FVIII therapy, “on demand” 4000 units per month. Eight joints are affected. Going to the store causes bleeding in one of my elbows. That’s the reason I’m writing. I became a writer. I kept physical activity to a minimum. I recently published an autobiographical novel dedicated to people with hemophilia.</p>
      <p class=”_1qeIAgB0cPwnLhDF9XSiJM”>https://www.smashwords.com/books/view/1095844</p>

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    • #11845
      Shellye Horowitz
      Keymaster

      Thank you for sharing the link to your book. What aspects of the hemophilia struggle are shared in your book?

    • #11846
      Milos
      Participant

      <span class=”VIiyi” lang=”en”><span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”hr” data-phrase-index=”0″>I tried to go into the metaphysical depths of the struggle with this terrible disease.</span></span>

      • #11849
        Shellye Horowitz
        Keymaster

        That is great – there are so many things that people with hemophilia struggle with. What have been some of your biggest challenges? For me, it was getting a diagnosis and treatment.

    • #11850
      Milos
      Participant

      <span class=”VIiyi” lang=”en”> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”sr” data-phrase-index=”4″>The biggest challenges were: where should a person with hemophilia be treated?</span> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”sr” data-phrase-index=”5″>In orthopedics or hematology?</span> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”sr” data-phrase-index=”6″>I am 62 years old.</span> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”sr” data-phrase-index=”7″>During my childhood in the communist circumstances in Serbia, not much importance was attached to rare diseases, so many of us were treated incorrectly.</span></span>

      • This reply was modified 1 month, 3 weeks ago by Milos.
      • #11857
        Shellye Horowitz
        Keymaster

        That must have been so hard – to not have access to treatment that you needed.

        • #11863
          Milos
          Participant

          It makes me think a lot.

    • #11852
      Milos
      Participant

      <span class=”VIiyi” lang=”en”><span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”sr” data-phrase-index=”0″>They most often sent me to orthopedics.</span> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”sr” data-phrase-index=”1″>There I was treated with long-term plaster immobilizations.</span> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”sr” data-phrase-index=”2″>This caused atrophy of my extremities.</span> <span class=”JLqJ4b ChMk0b” data-language-for-alternatives=”en” data-language-to-translate-into=”sr” data-phrase-index=”3″>More than that than the disease itself.</span></span>

      • This reply was modified 1 month, 3 weeks ago by Milos.
      • #11858
        Shellye Horowitz
        Keymaster

        Oh my – yes, when one needs factor, immobilization is not that helpful – better to have factor. I had an experience once where I had an ankle injury for a year and they had me in casts too – it only healed when 9 months after injury I finally got factor…

        • #11864
          Milos
          Participant

          I see that we are all victims of improper treatment. More or less. It all depends on social factors and the circumstances in which we lived.

        • #11867
          Shellye Horowitz
          Keymaster

          Very true – so many “victims” of hemophilia – those who got HIV and Hepatitis, like my dad; women who they thought could not have it, and many in countries that lack access to diagnosis and treatment. It is not an easy disease for sure. Do you have access to prophylactic treatment for bleed prevention where you live?

        • #11868
          Milos
          Participant

          I was infected with Hepatitis C but received antiviral therapy. Now they consider me cured, because PCR is negative. I was on prophylaxis for a while, but now I am on “on demand” therapy. Doctor’s decision. The doctor said that there was no point in me being on prophylaxis because I was older, and besides, my joints were very damaged. I asked him to give me Hemlibru or rFVIII. Not to me. He says such are our laws. If that’s the case in other parts of the world, we’d better never be born.

        • #11869
          Shellye Horowitz
          Keymaster

          That must be hard – I cannot imagine having prophylactic care and then losing it. I am very active, so without it I get bleeds a lot… or would have to sit at home and do nothing. You are correct, in some countries it must be so difficult – some people cannot get factor at all.

    • #11854
      Milos
      Participant

      Other challenges are related to schooling. I lost a lot from teaching. That needed to be made up for.

      • This reply was modified 1 month, 3 weeks ago by Milos.
      • #11859
        Shellye Horowitz
        Keymaster

        I am sure that was hard too – it is not easy to miss school due to injuries/ bleeds.

    • #11862
      Milos
      Participant

      Yes.

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