@shellye-horowitz
-
Shellye Horowitz started the topic Struggling with Self Infusion? in the forum Living with Hemophilia 1 year, 5 months ago
In the hemophilia community, I often hear people struggling with self-infusion. I have actually gotten better, but a few years ago I was really struggling. Here is a glimpse into that time:
How do you cope with infusion challenges?
-
Shellye Horowitz started the topic A Controversial Shirt in the forum Women with Hemophilia 1 year, 5 months ago
Sometimes I like to make people think. Once I did it by wearing a controversial shirt to a conference. Here is the story:
-
Shellye Horowitz started the topic Conferences can be Empowering! in the forum Living with Hemophilia 1 year, 6 months ago
Have you ever been to a hemophilia conference? I have been to a few that have changed my life – literally. They helped me learn how to access treatment that improved my quality of life. Have you experienced the same? What have conferences added to your…[Read more]
-
Shellye Horowitz started the topic How DNA helps explain Hemophilia in the forum Living with Hemophilia 1 year, 6 months ago
Many doctors discuss the hemophilia genotype (your genetic mutation that causes hemophilia) vs your phenotype (how you actually experience hemophilia or your personal bleeding patterns). I found that learning about my genotype explained my phenotype- have you ever wondered how that correlates for…[Read more]
-
Shellye Horowitz replied to the topic Hemlibra in the forum Using our forums 1 year, 6 months ago
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!
-
Shellye Horowitz started the topic Loving and Hating Hemophilia in the forum Living with Hemophilia 1 year, 6 months ago
When I have an active bleed I hate hemophilia – a lot! But there are also times when I have appreciated the community it has brought into my life. In this column, I reflect on the balance of loving and hating hemophilia – what are your thoughts?
-
Shellye Horowitz started the topic Pregnant with Hemophilia in the forum Women with Hemophilia 1 year, 6 months ago
Pregnancy can be scary when someone has hemophilia. Brandi shares some rough moments – can you relate? How did you keep yourself and your baby safe?
Female Focus: Brandi’s Story Through Pregnancy and Childbirth
-
Shellye Horowitz replied to the topic Anger, Isolation, and Covid-19 in the forum Living with Hemophilia 1 year, 6 months ago
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…[Read more]
-
Shellye Horowitz started the topic Women DO get hemophilia in the forum Women with Hemophilia 1 year, 6 months ago
Sometimes it is good to have a reminder about how and why a woman can get hemophilia. It is much more common than people realize. Do you know a woman who did not get the diagnosis they needed?
-
Shellye Horowitz started the topic Sticking with your prophy routine. in the forum Hemophilia Treatment 1 year, 6 months ago
Sometimes I find that I struggle to infuse. Just last week, I was so tired on a Friday night that I pushed off infusion a day…. When I do this I am more likely to have a bleed. What motivates you to stick to your routine? How do you keep going?
-
Shellye Horowitz started the topic Hemophilia or Anxiety? in the forum Living with Hemophilia 1 year, 6 months ago
Have you ever been accused of being a hypochondriac when you KNEW something was wrong? In this column I spoke about being diagnosed with “anxiety” when I really was struggling with undiagnosed hemophilia
What are your experiences?
-
Shellye Horowitz posted a new activity comment 1 year, 6 months ago
Hi Gabor! Welcome to our Hemophilia Forum! I look forward to learning more about you. Please reach out if you have any questions!
-
Shellye Horowitz posted a new activity comment 1 year, 7 months ago
That sounds like a good plan – keep in mind you do not have to use an entire stock, as if you are on Hemlibra you still treat with factor for a breakthrough bleed.
-
Shellye Horowitz posted a new activity comment 1 year, 7 months ago
I think it is always good to get insight from others. I know many individuals who have said Hemlibra was a game-changer for them. It can get hard infusing multiple times a week….. and when veins do not cooperate it is not fun at all.
When are you planning to start Hemlibra?
-
Shellye Horowitz posted a new activity comment 1 year, 7 months ago
Welcome to our forums! Please let me know if I can assist you!
-
Shellye Horowitz posted a new activity comment 1 year, 7 months ago
Welcome to our forums! Please let me know if I can assist you.
-
Thank you. I am planning on moving from factor vIII 3 times a week injections for my severe Haemophilia A to Hemlibra as my veins are just about giving out, so trying to get other patients insights into using it. Bit worried about some of the more serious side effects even though less common.
-
I think it is always good to get insight from others. I know many individuals who have said Hemlibra was a game-changer for them. It can get hard infusing multiple times a week….. and when veins do not cooperate it is not fun at all.
When are you planning to start Hemlibra?
-
I need to use up my stock then go if for trials probably after the new year
-
That sounds like a good plan – keep in mind you do not have to use an entire stock, as if you are on Hemlibra you still treat with factor for a breakthrough bleed.
-
-
-
-
-
Shellye Horowitz replied to the topic Gene Therapy Reduces Bleed Rates Among Patients With Hemophilia A in the forum Using our forums 1 year, 7 months ago
It is interesting. I hope one day they will find a cure through gene therapy.
-
Shellye Horowitz replied to the topic Gene Therapy Reduces Bleed Rates Among Patients With Hemophilia A in the forum Using our forums 1 year, 7 months ago
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.
-
Shellye Horowitz replied to the topic Hemlibra in the forum Using our forums 1 year, 7 months ago
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.
-
Shellye Horowitz replied to the topic Haemophilic arthropathy in the forum Using our forums 1 year, 7 months ago
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.
- Load More
I need to use up my stock then go if for trials probably after the new year
That sounds like a good plan – keep in mind you do not have to use an entire stock, as if you are on Hemlibra you still treat with factor for a breakthrough bleed.