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    • #11880
      Shellye Horowitz
      Keymaster

      There are a few drugs in trials for Hemophilia A – they have had some really great success with Hemophilia B – the drugs are harder to develop for Hem A.

    • #11860
      Shellye Horowitz
      Keymaster

      As far as I understand, the mechanism for Hemlibra is different and it does not work on demand, but must build up in your system. People who are on Hemlibra still need to take factor if they get a bleed – but many bleeds are prevented by taking it.

      Hemlibra is not the actual factor, but similar enough that it is able to help bind FIX to FX to continue the clotting cascade (as I understand it, but someone else may be able to explain it better). When having an actual bleed, factor is more effective to stop the bleed – Hemlibra is great to prevent bleeds – it is for prophylaxis.

    • #11845
      Shellye Horowitz
      Keymaster

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

    • #11956
      Shellye Horowitz
      Keymaster

      That is not the way it was developed – it was meant to be a subcutaneous injection. I think the point was to create something that did not require IV administration, as that is easier for most people!

    • #11951
      Shellye Horowitz
      Keymaster

      Oh no, Alliah. I am so sorry to hear what your family is having to cope with. How scary. I am glad to hear that his symptoms are mild. It can feel so disempowering when we cannot do much for our loved ones – and the isolation involved with COVID to stop the spread is so emotionally taxing for families.

      How is he holding up, how are you and your daughter coping? How many more days do you have to be separated?

      Hang in there~
      Shellye

    • #11883
      Shellye Horowitz
      Keymaster

      It is interesting. I hope one day they will find a cure through gene therapy.

    • #11879
      Shellye Horowitz
      Keymaster

      Hemlibra works differently than factor so it is a bit hard to compare. It is not meant to treat bleeds in real time, but to prevent them. It apparently keeps a person at the equivalent of a FVIII level @ 30% (look it up, don’t quote me) so that it is good to prevent spontaneous and mild bleeds.

    • #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.

    • #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?

    • #11866
      Shellye Horowitz
      Keymaster

      It is my understanding that there are clinical trials right now for Hemlibra in those with mild hemophilia – again, taken regularly to prevent a bleed.

    • #11859
      Shellye Horowitz
      Keymaster

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

    • #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…

    • #11857
      Shellye Horowitz
      Keymaster

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

    • #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.

    • #11572
      Shellye Horowitz
      Keymaster

      Thank you, Michael for the tips!

      Packing with cotton was not a pointer I have heard in the past, and it makes sense and sounds so helpful.

      I am sorry you have felt the embarrassment and inconvenience of nosebleeds too.

      I remember the particular horror of bleeding all over my fifth grade classroom (the kids were pretty mean) when my nose erupted one time. That same time I argued with the school nurse about why I should not lean my head backwards…. I get she didn’t want the blood everywhere, but I did not want those stringy ropes down my throat and I didn’t want to throw up!

      I have memories of my dad pinching both his nose and mine when we had simultaneous bleeds.

      I did not make the prophy connection, but now that you mention it I have also not had a nosebleed since I have been on prophy.

      Thank you, again – I know your advice will be helpful to many!

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