Looking for solutions helps me overcome obstacles with Duchenne

In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight, or read the full series.

Living with Duchenne muscular dystrophy (DMD) comes with many challenges. On one hand, it takes away physical strength. On the other, it has given me emotional strength to face the world. It’s taught me to be creative, to look for solutions to the challenges that sometimes arise, and, above all, to be resilient.

I was always a happy kid, living with my parents and sister in São Paulo, Brazil. I was diagnosed with Duchenne when I was about 4, after receiving many different answers from different doctors. At the time, my aunt lived in London, and we traveled there for treatment every year for about 10 years.

Gui Panhota poses with, from left, his sister Paola and mother Elaine, and at right, his father Jose Roberto, while traveling in Switzerland. (Courtesy of Gui Panhota)

My family always valued education, but the schools in our area were not very accessible. So, my incredible parents decided to build a school — an elementary school that grew year by year as my sister and I grew up, through high school. Because of them, I had access to a great education close to home.

In 2013, I was accepted into one of Brazil’s top business schools to study economics. In 2016, I had the incredible opportunity to go on an exchange program to West Virginia. I could never have imagined living abroad alone — but I did! I made great friends, visited new places, and had amazing experiences.

When I returned to Brazil, I started working as an intern. My life was divided into three shifts: classes, work, and physical therapy. I also had a girlfriend and needed time for her! It was an intense period, but I felt happy and productive.

My university graduation ceremony was deeply emotional. To my surprise, I was awarded the prize for best thesis in economics. It was one of the happiest days of my life!

That award opened another door: a job at Bank of America! By then, I had already had my driver’s license, and I was commuting to work on my own — that feeling of freedom and independence was amazing. I even had the chance to attend a one-month training in Charlotte, North Carolina.

After nearly four years, I decided to leave the bank and open my own investment company with a few partners. It was a challenge, but also a great learning experience. I returned to my old school — this time, to work alongside my parents, to give back for everything they had built for me. Now, I’ve started an MBA at the same university where I graduated. Staying productive and meeting new people is what keeps me going!

Yes, I have Duchenne. But no, it does not limit me. I’m 29 now and have caregivers who assist me, but I enjoy a great quality of life. For those living a journey similar to mine: Keep going. Let’s continue doing the things people think we can’t. Duchenne does not define us!