Last week, I traveled to Barcelona, Spain, and Rome Italy to speak with individuals living with Duchenne and Becker muscular dystrophy. It was an amazing trip, and the Italian meeting was attended by more than 500 people. This was their first live meeting since before Covid, and I am happy to tell you all that great progress has been made in Italy with regards to care and quality of life for individuals living with MD. I met 26 young men, and all of them look toward the future with hope, goals and dreams. Through a series of translators, they asked me questions ranging from “How do you travel on an airplane?” to “How do you meet girls?” to “Is it true that people in the United States eat hamburgers everyday?” Of course to that one I replied…”No, most times we put cheese on them.”
I have not visited Rome since 2011, and it is clear that Italian youth views our country chiefly through the lenses of TikTok and Instagram. They think the majority of us are wealthy and that we stream shows, eat junk and fast food and generally live in paradise, or that our streets resemble the video game world created by Grand Theft Auto. It is kind of frightening that TikTok videos that are viral here are also viral there. I had to gently explain that our world is not really like this from day to day.
They are also very interested in school, and the length of our year. The kids in Rome get a week or more off around Easter, as well as Christmas, but were quite curious about “American Thanksgiving” as well as “Labor Day” (they call it National Workers Day).
By far, the coolest part of the trip was connecting with these young men. I have written here about the Patient Adult Advisory Committee that I help lead here in the states, and I am hopeful that the Italian men will create an advocacy group of their own similar to ours. There is much work to be done to change Italian law to embrace disability as diversity as well as overcome long centuries of tradition: Italians as a people are resistant to change. When asked what I do when I am out in public and people stare at me, I replied…..”It’s simple. Stare back….and smile.”
To learn more about our PAAC group, visit HERE
To learn more about what’s going on with Duchenne and Becker life in Italy, visit HERE. Get your Google translate site ready. haha.
Meeting with some young men in Rome Italy. They all want to know if Instagram and TikTok are “real life” over here. Oh boy…where do I even start?
Stay safe, stay awesome, and stay tuned.
Patrick moeschen 