Milos
Forum Replies Created
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Thank you, Cazandra.
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Activated protein C inhibitor for correction of thrombin generation in hemophilia A blood and plasma.
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I know about that, but there are drugs that can be given in several ways: intravenously and subcutaneously and muscularly and orally. If Hemlibra could be given intravenously then it could act immediately. In other words, Hemlibra could be used as a diamond, and not just preventively.
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Milos
MemberAugust 6, 2021 at 3:40 am in reply to: Gene Therapy Reduces Bleed Rates Among Patients With Hemophilia AI think after Hemlibre is followed by gene therapy. And that is the final cure.
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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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<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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<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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<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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Milos
MemberAugust 5, 2021 at 11:37 am in reply to: Gene Therapy Reduces Bleed Rates Among Patients With Hemophilia AIt’s interesting.
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I’m trying to figure out what’s the point. FVIII has a range of normal values of 50% -150%. FVIII is consumed during bleeding but until it falls below 30% it is effective. And Hemlibra is consumed. However, unlike FVIII, only the booster level is effective. I guess that’s the point. In other words, Hemlibra is consumed very quickly if bleeding already exists. And they must not give it in large quantities because of thrombosis.
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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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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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It makes me think a lot.