I struggle when I lie down to sleep, and my legs hurt so much that I need to move them. I don’t get a good night’s sleep, and when I awake in the morning, my brain is foggy and I feel like I’m moving around in a bubble. I am…
The Forgotten Factor - a Column by G Shellye Horowitz
I have been applying to graduate programs that would incorporate more spirituality into my advocacy work with the hemophilia community and allow me to explore how faith and spirituality help people cope with bleeding disorders. Among them was a dream doctoral program for working professionals that offered students scholarships…
“Today I am thankful for warm showers and a safe place to live. Dog kisses, even when I am grumpy, make me thankful. I am thankful I did not come unglued when I was frustrated at work.” In November 2020, as part of a women’s hemophilia retreat sponsored by…
Not long after I started working at the Hemophilia Federation of America (HFA), the organization hosted a congressional reception to help raise awareness about bleeding disorders. The bleeding disorders community must maintain its visibility among government decision-makers who help address important issues, such as ensuring our access to the…
I love a good routine because they’re predictable and comforting. As someone who is anything but a morning person, I find my morning routine to be the most essential. I’m not particularly fond of breakfast, so as part of my routine, I make myself a smoothie that I usually finish…
I had a lot to learn about hemophilia when I attended my first retreat for women with bleeding disorders in 2017. Some of the attendees were comparing their levels of clotting factor VIII (FVIII), the protein that’s deficient in hemophilia A, when I was shocked to learn mine were the lowest…
Hemophilia is sometimes a surprise in families. Research shows that approximately 30% of cases of hemophilia A and B are sporadic, meaning there’s no known family history. “This happens when a new alteration in the F8 or F9 gene occurs by chance in an egg cell or…
Have you ever felt as though God or the universe was reaching out to offer you comfort? Whether you pray to Jesus, Allah, Adonai, or honor the gifts of Mother Earth, being in tune with your spiritual self can be a profound source of solace during the challenges of living…
“We are uncomfortable with you around and struggle to be in your presence. We find that you talk too much and are self-centered. When you hosted dinner, you made us eat in an insulting location we did not like,” the person said. Defending myself, I said, “I am so sorry,…
Out-of-pocket maximum: This term is used by health insurance companies to inform customers of the maximum amount they may have to pay in a year for covered medical care, excluding premiums. Once this maximum is reached, the insurance plan covers 100% of eligible medical expenses for the rest of the…
