As we continue to look back on the incredible year we have had, we want to recognize others who have shared their inspirational stories, strength and commitment to continue to do the things that they love. As we mentioned in our first post, throughout the remainder of 2016, we will be sharing these stories from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.
Your support is life-changing to those in the Society and with your continued dedication to finding a cure, we know that this challenge is possible. Continue reading below to hear more from Kristen, Tom, and Zabrisa on how they are raising awareness, doing what they love and how the Society has helped them along the way!
Kristin Duquette: At the young age of 9, I was diagnosed with FSHD, not knowing how it was going to impact my life. For years I struggled to come to terms with a progressive condition, especially when having the mindset and goals of an athlete.
The FSH Society helped me connect with other like-minded people from across the country and world. These important relationships have made me realize how strong and caring the FSH community is.
Without the countless donations given to the Society, there would not be a unified message of hope from patients to friends and family members.
Thomas Smith: I was diagnosed around 1984. My doctor assured me that I could continue life as normal, and the only issues I would have would be raising my arms above my head when I reached my 60’s. My only symptoms were pain, and shoulder weakness. After my diagnosis, and initial shock, I did what any normal kid being diagnosed with muscular dystrophy would do. I joined the Air Force. I even have my enlistment medical exam with FSH clearly listed as medical conditions. Ah yes the lack of internet, and a complete ignorance of this disease was prevalent in the early 80’s. The only thing they asked me to do was obtain a letter from my doctor stating that this would not disqualify me. I showed up unannounced (as only a 19-year-old would do), and asked the receptionist at the medical clinic that confirmed FSH for this letter. She seemed skeptical, but I was very determined, and she asked me again what exactly I was looking for in the letter. She disappeared for a while, and reappeared with a letter stating exactly what I had mentioned. Thus began an excellent 9-year career in the Air Force, with the Colorado National Guard. …
… I have no regrets. I’ve had a very full and active life, a wonderful family. I’m stubborn, and annoyingly optimistic. It was probably a good thing that my parents did not shelter me as a child, I was very active, but surely they could see the physical issues I was having, pictures from high school clearly show symptoms, and very skinny arms. I pushed myself hard physically, and probably paid a price for it in my later 40s.
Everyone at the FSH Society is doing great things to help. Keep up the hard work and most importantly, education on the disease!
Zabrisa Zelinski: My name is Zabrisa. I’m 18 years old, and was diagnosed with FSHD when I was 2. I’m a poet, bibliophile, and wannabe world changer.
I’d like to say thank you to everyone who has donated to the FSH Society. Your support means more than you will ever know.
The FSH Society has helped me a lot in my path towards accepting myself as a disabled person. I’ve met others who are going through the same thing I am. It helps knowing I am not alone in this. Some days it’s hard to get out of bed and face the world. But even on the worst days I know that it will get better. I will persevere. I am hopeful that one day there will be a cure.
Thank YOU for making a difference! With your continued support, we can continue our work to push toward treatments and transform the lives of thousands of individuals and families living with FSH muscular dystrophy – as they all reach for and achieve their own victories!