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Haemophilic arthropathy
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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></div>
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15 Replies
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Thank you for sharing the link to your book. What aspects of the hemophilia struggle are shared in your book?
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<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>
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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.
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<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>
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That must have been so hard – to not have access to treatment that you needed.
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It makes me think a lot.
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<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>
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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…
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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.
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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?
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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.
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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.
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Other challenges are related to schooling. I lost a lot from teaching. That needed to be made up for.
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I am sure that was hard too – it is not easy to miss school due to injuries/ bleeds.
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Yes.
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