My name is Eduardo Silveira. I was born and raised and live in Sao Paulo, Brazil. I was diagnosed with FSHD when I was 20 years old and no one else in my family has this disease.
As a child and teenager, I was very active and used to compete in Tennis, Squash, Volleyball, Martial Arts and Motocross. I loved action movies, heroes, and professional forms of fighting. I have always been very inspired by martial arts fighters, tennis and squash professionals because my dream was to be a professional in all these areas.
At the age of 20 I began to have difficulty moving my upper limbs. I noticed this most when I was playing tennis, squash and volley. I also starting noticing it was difficult wearing shirts and jackets and this was because my shoulders began to shift frequently. This is the time when I began to lose strength in both my arms.
I spoke to my parents about the issues I was experiencing with my body in which they both became extremely worried. This is when we started speaking to doctors and healthcare professionals such as orthopedists, neurologists, physiotherapists, masseurs and even healers to try and get some help and answers on why I was experiencing such things.
FSHD has completely changed my life. Initially, because I had to abandon all physical activity. I gained 80 pounds, and totally lost the muscles in my arms, chest, back and abdomen.
Already very weak I made a decision to return and practice bodybuilding, pushing my body to limits. Shortly after this I was able to return to playing tennis and squash again but only for pleasure. I was no longer competing.
During this stage I somewhat felt that my life was back to normal. I did absolutely everything, with only some limitation of movement of my arms in which I could not raise above shoulder height. Playing again made me extremely happy and fulfilled even if it meant I couldn’t compete.
In 2006, I took on the Camino de Santiago de Compostela in northern Spain, where I walked with 40 pounds in my backpack for 313 kilometers alone in the Spanish winter. After 13 days of walking I was able to complete this with no issues, but the following year in 2007, I began to feel weakness in my legs and by the end of the year I starting using walking sticks to help with balance issues.
When it comes to my sense of humor, FSHD has taken a lot out of my joy, and I‘m a closed and stressed person, almost always nervous. I still like to travel a lot, which gives me joy, and I try to live as completely and happily as possible, but this progressive weakness in my lower limbs makes me very sad. I can now only walk with a cane and when i know I have to walk longer distances I use my electric wheelchair.
Today as a hobby I draw inspiration from the stories of people who don‘t give up. I never give up and I still continue to do forms of bodybuilding every day, physical therapy and Pilates to try and keep my body moving and as active as possible.
I use Instagram as a way to communicate and show others that are living with FSHD that it is possible to live happy and well with the disease. Through my posts and stories, I like to show that I don‘t stop, that I continue to exercise, travel and enjoy life as much as I can.
I know this inspires and motivates many people, especially with FSHD, and other limiting diseases, as
I am always looking for information and feedback on treatments, exercise, travel and emotional support.
Last year, I opened in Brazil the first specific association of FSHD, ABRAFEU – Brazilian Association of Facioscapuloumeral Muscular Dystrophy. This is to precisely help Brazilians with FSHD understand the disease, support, suggest treatments, exercises and show that there is life even with FSHD. We also guide family members, caregivers, doctors and therapists.
Today, people from all over Latin America come to us for information and build a Latin American FSHD network. We hope to help others find ways to carry out low-cost or free genetic testing so that people have the right diagnosis and care.
We are always in touch with other charities and societies, participating in meetings and congresses, with the intention of bringing news in the area of treatments and medicines to our members and to eventually be able to bring clinical trials to Brazil, for Brazilian and Latin American’s.
I hope my story of FSHD in which I have been fighting for almost 30 years can motivate and encourage others with the disease. To understand and ensure we live together in the best way possible, enjoying everything that life even with limitations can offer.
I live my life enjoying every moment, pushing my limits, straining my muscles, and still travelling with my wife, the person who supports and encourages me most in everything.
Eduardo Conrado Silveira