Traveling Thousands of Miles to Learn About the DMD Community
CureDuchenne helps a columnist share his experiences with families in Hungary
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I never thought that being diagnosed with a rare muscle condition called Duchenne muscular dystrophy would one day lead me to Budapest, Hungary, but life always surprises me.
A few weeks ago, I jumped on a flight to the historic European city to speak at a Duchenne conference. Two families there had connected with the foundation my parents started, CureDuchenne, and were eager to hear more about our story and how to better care for their young boys with the condition.
I was so impressed with their thirst to learn about Duchenne from my experience. What struck me the most from the entire experience in the Hungarian capital is how much of an impact you can make on people without realizing it. By living my life — doing my best in school, graduating from the University of Southern California, and having my own job and apartment — I was giving these families hope that their boys could do the same.
Before the conference, my parents and I, and two CureDuchenne physical therapists who accompanied us, had the opportunity to meet Agnes and Adrianna, the mothers who organized the event. We had dinner with both families at Adrianna’s house in the suburbs of Budapest and were treated to home-cooked beef with Hungary’s signature pasta and small cakes. The families were all wonderfully hospitable and gifted each of us hand-painted Hungarian plates to take home.
Agnes’ and Adrianna’s boys with Duchenne were young and could still walk and run. During dinner, we heard screaming and laughing in the basement as they played laser tag with their brothers and friends. It reminded me of my friends and I shooting one another with Nerf bullets back in the day.
While we live over 6,000 miles away, we share many of the same experiences, albeit in a different language and culture. Duchenne isn’t any different whether you live in Uganda, the U.K., or the U.S. It’s equally as bad wherever you go.
The real discrepancies between countries come with care, so I was happy to share what supplements, diets, and stretching routines worked for me. At the same time, I was also impressed with the standard of care presented at the conference by local doctors.
But according to Agnes and Arianna and other families, those who live farther outside the city don’t have the same kind of care. The more we can distribute lessons learned about Duchenne, the better we can improve the quality of life of everyone with this terrible condition.
I believe the best way we can overcome Duchenne is by learning from one another. I was recently reminded of that at a CureDuchenne Cares family conference in Pasadena, California. Thanks to a mom I met there, I discovered there was a waiver in California that allows you to receive compensation from the state for more caregiving hours.
My trip to Budapest was a small drop in the bucket when it comes to improving the lives of people with Duchenne. I hope sharing my experience changes the outcome for as many families as possible. Small interventions early on, specifically steroids, can do a lot to help extend the precious lives of these children and young adults (including myself).
While I was in Hungary to tell others my story, I learned a lot more about the importance of community. There is power in numbers.
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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