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:

Struggling with Self-infusion

How do you cope with infusion challenges?

Sometimes I like to make people think. Once I did it by wearing a controversial shirt to a conference. Here is the story:

Creating Conversation with a Controversial Shirt

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… Read more

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… Read more

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!

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?

My Hate-Love Relationship with Hemophilia

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

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… Read more

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?

We Must Recognize that Women Can Get Hemophilia

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?

Motivating Myself to Stick to My ‘Prophy’ Routine

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

Determining Cause and Effect With Anxiety and Hemophilia

What are your experiences?

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

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.

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.

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.

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?

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.

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… Read more

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

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…

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

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.

Do you have a target joint that bleeds and bleeds? I once had a span of time where I kept re-injuring my knee and it was so frustrated! Just when I thought I was healed, I would get yet another bleed. Eventually I got myself into physical therapy and switched factor products – the combination of the two was a huge help for me. What do you… Read more

Do you remember how scary it was to have hemophilia in the 80’s? Fear of HIV, Hepatitis and other blood-borne pathogens was hard to cope with. Before the scare of the 80’s many hemophiliacs struggled to stop bleeding episodes, with limited options of medications to stop bleeding. Today people in many countries still struggle to access… Read more

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

Your hemophilia genotype refers to the genetic mutation that causes hemophilia and your actual factor levels. Your hemophilia phenotype refers to your actual bleeding experience. Sometimes these line up well and factor levels are great indicators of how a person might bleed. Sometimes these do not line up at all and patients may baffle… Read more

Do you have a child who wants to play sports? Do you want them to have a “normal” life, but worry they could be subject to injuries? HERE is one take on hemophilia and physical activity. What are your thoughts?

Sometimes people struggle with more than just hemophilia. Neurodiversity can present unique challenges to building relationships with providers and accessing care. Do you or your child have this additional challenge? Read more HERE.

Do you know the difference between Hemophilia A and Hemophilia B? Hemophilia A is the deficiency of FVIII and Hemophilia B is the deficiency of FIX. Both are critical components of the clotting cascade. Hemophilia A is more common than Hemophilia B. Both were once thought to only affect men. As such, women with Hemophilia A and women… Read more

Are you a women struggling with hemophilia? Is it hard to connect with a provider for a diagnosis and care? HERE is some advice. What has helped you?

It was recently announced that Stimate will not be available until 2022. What alternative options are you pursuing? Has your hematologist been helpful in finding an alternative?

Are you planning a trip this summer? How do you prepare? Travel with hemophilia does not have to be a struggle. Check out THIS column post on travel with hemophilia.

Do you understand the genetics behind your bleeding disorder? I was fortunate enough to get my genetics tested and learn more about my hemophilia mutation. This explained my bleeding tendencies. The new knowledge drove my treatment. Have you considered genetic testing?

What does it mean to you to OWN your hemophilia? Do you have your treatment plan down? Are you able to do the things you want to do in your life? Does hemophilia stop you from pursuing your dreams?

Check out this LINK to a post on owning hemophilia.

In Fall of 2016 I attended my first women’s hemophilia gathering. This event changed my life. I connected with women who encouraged me to find care. They told me I wasn’t alone. Have you had a turning point when you realized you were not alone?

Have you been to local, national or international hemophilia events? I find that my participation in community events helps to renew my spirit. These events have also provided me with valuable information that has greatly improved my healthcare. If you have attended gatherings, what have you gained from them?

 

When I fell and broke my sacrum I needed to infuse. The pain and the anxiety in the situation preventing it, despite my trying 12 times. When I hemorrhaged after a surgery, I was so scared.  To this day I get worked up when I think of that moment, which was over two years ago. As time goes on and I become more confident in treating myself… Read more

Do you have anxiety about going to see doctors about hemophilia? As a woman, I often get nervous when I see my providers, particularly if it is a new one. I am worried they will not take my hemophilia seriously. My care has improved immensely over the past few years, but not every woman is as lucky as I am.

I have learned to come to… Read more

Living with a chronic condition can often be a challenge. It is not uncommon for individuals with hemophilia to suffer from depression. It is okay to reach out for help. You are not alone.

Why is it that a male baby born into a family with hemophilia has their factor levels tested shortly after birth, but girls can wait years to be tested? I personally believe that males and females must be tested early so that they can be protected in case of emergency – what do you think?

How often are your factor levels tested? I think most people are tested yearly at their comprehensive HTC appointment. This is a standard of care established years ago in hemophilia treatment. What is concerning about this is that it was created based on a norm for male patients.

If a woman, for example, is in menopause, her levels may… Read more

Have you heard people talk about hemophilia C? Do you know how it is inherited? Hemophilia C is FXI deficiency.

Do you have experience with this rare disorder?