Living in a rural area can be challenging for those with DMD
Long drives and limited local access to specialists are among the difficulties
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Nebraska does have big cities. Well, it has two big cities. And the truth is that Omaha, our largest, is smaller than places like Denver, Los Angeles, and New York.
If you have not read my column before, we live in Nebraska, a rural state in the middle of the country. If you have heard of Nebraska, it’s probably because sometimes they show Omaha on a national weather map or you followed Husker athletics. You have probably never heard of Hastings, where my family lives.
Like my husband, I have lived in Nebraska for over 40 years. Our children have never lived anywhere else. I can’t imagine ever moving to another state.
We experience all four seasons here. There is no replacing the crisp smell of leaves in the air each fall or the statewide excitement for the first University of Nebraska football game. Then there is the anticipation of the first snow, waking up to birds chirping outside an open window in the spring, and the magic of warm summer nights.
We have great, weird food combinations like hamburger on our pizzas, runzas, and chili and cinnamon rolls. (That’s right, we eat chili and cinnamon together, and it’s a proper meal.) And if you are prone to run a half-marathon, there are no hills (outside of Omaha), and it’s a runner’s dream. I love my state!
However, as a Nebraskan raising three Nebraskans living with Duchenne muscular dystrophy (DMD), I long for healthcare providers with DMD expertise closer to home. Unfortunately, living in a rural area makes it challenging to find experienced providers within a three-hour drive.
Hours and hours on the road
When my sons were diagnosed with Duchenne 12 years ago, we started traveling to a neuromuscular clinic in Cincinnati, Ohio, more than a 14-hour drive. When COVID-19 hit, we changed to a clinic in Denver, which was much closer to home but still a six-hour drive.
We have a great team of doctors in Denver and are very happy with our experience. But sometimes it would be nice to travel less for care.
Our oldest son, Max, recently fell and broke his femur. We saw a local doctor who had limited experience with DMD, which slowed down the process. We had to see a second doctor to get a referral for physical therapy. Throughout the ordeal, we constantly communicated with Max’s team in Denver.
Last week, we were finally able to see an orthopedic surgeon at the clinic there. It was a relief to have a doctor experienced in Duchenne to ensure we were doing things correctly.
The fractured-femur experience was sufficient for me to know that I would drive to Denver as soon as possible if we have any future fractures. Hopefully, that won’t happen, but I do worry about other future health emergencies. Knowing that our team is six hours away isn’t very comforting.
Another example is clinical trial participation. Having a clinic in Nebraska that participated in more clinical trials would be awesome. We have been part of an ataluren trial for almost a decade and have had to drive to Kansas City (five hours) or Denver (six hours) all those years for trial visits. Of course, the trials pay for travel, but they still involve time away from school, stress from traveling with kids, and the splitting of our family when half of us are away.
We were fortunate that the ataluren trial would require site visits at most every six weeks. But we might one day want to be involved in trials that require weekly visits. That kind of travel can deter participation.
Rural life undoubtedly isn’t for everyone. My family loves it, but it creates challenges when managing a rare and complex disease like Duchenne. I don’t think there is only one right way to address these challenges, but I don’t know exactly how it should be done. Like most things with DMD, we are figuring it out as we go.
Note: Muscular Dystrophy News 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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