What It’s Like Having Hemophilia and Living in a Rural Town

I live in the middle of nowhere. It is one of the most beautiful places on the planet. The forest and the ocean intersect, creating some of the most gorgeous hiking trails I have had the pleasure of traversing. Nature is our playground, with thousands of acres of beaches, forests, and rivers.

I love this place with all that is in me. I feel like I breathe more easily because I am surrounded by trees. This is my happy space. I have stayed because there is often no place I would rather be. No other place I can envision myself being.

Can you see the deer? (Photo by Shellye Horowitz)

Rural care

Yet living where I do is also terrifying. There are four small hospitals in our county, none of which carry the clotting factor I would need in an emergency situation. If I had a medical emergency, I would most likely need to be transported out of the area. In fact, the first thing I bought when I moved here was a membership to a medical evacuation insurance plan.

How isolated are we? My chosen hemophilia treatment center (HTC) is 385 miles away. It takes about eight hours with stops (and no traffic) to drive there. The closest HTC is 293 miles away, still a significant drive at about six and a half hours with stops. If I had an emergency situation, I would not be medically evacuated to the treatment center I prefer, as it crosses a state line.

Living far away from a treatment center may be OK for yearly checkups and routine issues, but it is frightening when urgent care is necessary. Additionally, I have sustained multiple injuries and questioned whether or not I was bleeding. The distance prohibited me from visiting my HTC to have the injury evaluated by experts in person.

Hope’s happy place. (Photo by Shellye Horowitz)

I felt alone

It can be really lonely living with hemophilia in a rural community. One day, something amazing happened. I met someone at my place of employment who also has hemophilia. I think it surprised both of us. What a gift to meet someone else!

I contacted our local hemophilia chapter, and they agreed to sponsor an event. Would there be enough people in our area? Would anyone come? We searched their directory by area code and zip code and extended a warm invitation to anyone believed to be in our area. I personally called each person to encourage them to join our local community gathering.

When we finally united, we had more than 24 people in the room for an industry-sponsored dinner and education night. Multiple people said they believed they were the only local family with hemophilia. There were even women with bleeding disorders! The connections were such a gift.

Unfortunately, we only met twice before dinners were put on hold due to COVID-19. I am hopeful we will be able to rebuild the momentum and bring our local rural group together soon.

While I do wish I had the convenience of being closer to the hemophilia experts who guide my care, I feel incredibly blessed to have discovered a lovely group of people in our small community who can support one another.

Sometimes we find connection where we least expect it. I found it in my blood brothers and blood sisters who have also chosen to live their lives far away from the big city.

(Photo by Shellye Horowitz)

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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.