Finding life’s miracles despite living with hemophilia A

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” — often attributed to Albert Einstein

I live with a bleeding disorder, hemophilia A. Survival often is truly about attitude, optimism, and perseverance. Recently, I came across the above quote and haven’t been able to get it out of my mind. It resonates with me so deeply. The journey I’ve had as a woman with a bleeding disorder who didn’t obtain a diagnosis until age 45 has not been easy. In spite of that struggle, I have so much gratitude for the many miracles life has brought to me.

It’s understandable why many people in the hemophilia community are stuck in the cycle of believing nothing is a miracle. In the 1970s and ’80s, about 90% of those with severe hemophilia were infected with HIV after using contaminated blood products. Many developed AIDS and thousands died, and the feelings of anger still remain raw for many families.

Recommended Reading

March 11, 2025 Columns by G Shellye Horowitz

Options exist even when hemophilia makes you feel trapped

Miracles along the way

When I look back at my life, I feel so fortunate to have had so many miracles along the way. Even times of struggle can have themes of the miraculous. I’ve shared how fortunate I was that my parents were mistakenly told I didn’t have hemophilia when I was 10. Being shielded from HIV-contaminated factor VIII products at that time saved my life.

As a child, I had stitches five times before age 5 — when I got cut, I just would not stop bleeding. When I ripped my eyelid on two different occasions, plastic surgeons did such a phenomenal job that it’s not detectable today. I experienced a miraculous complete healing in spite of not being on a treatment for hemophilia.

When I was in third grade, I told my parents I wanted to adopt children and not physically have any of my own. This was a strong conviction my entire life. I wanted to provide a home to children who didn’t have one. Not only do I have two amazing grown daughters, this miracle of a decision saved me from the possibility of severe postpartum hemorrhaging from undiagnosed hemophilia.

When my endometriosis resulted in surgeries, they were done laparoscopically. This less invasive choice helped the healing process, even as I oozed for weeks without the proper medications to help my blood clot. I cannot imagine what the outcome could’ve been if the surgery were invasive. It was a small and important miracle for me.

Reasons to be thankful

I have so many reasons to be thankful. My experiences give me a unique voice to advocate for myself and others. Knowing early access to safe medication may have changed my life, I can now use my voice to make sure girls are on the radar today.

I know the medications available during my childhood were not safe. As a result, I’ll never be angry my treatment was delayed. Again, it’s why I’m here today.

During the COVID-19 pandemic, I attended an online conference for women with bleeding disorders. Every participant was sent a goodie packet. Included was a gratitude journal. This journal asked me to list five things I was thankful for each night. I decided to use it. Five years and many gratitude journals later, I’m still using them.

A gratitude journal affords me the opportunity to account for the miracles, large and small, I experience daily. Some days I have a lot to appreciate. Other days I’m thankful simply for the capacity to take a hot shower or cuddle with my dogs. It’s a great way to end each day. I also love rereading old journals and remembering the small miracles each life season has brought me.

My life is not perfect. My diagnosis of a bleeding disorder with some complications can be incredibly exhausting. In each moment of challenge, however, I’m reminded that the miracles remain. There are days I have to search a bit harder to find them. They are almost always there, which brings me back to the Einstein quote. It’s possible to live my life as though everything is a miracle — because so many things are.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.