
I was diagnosed at 50 when a doctor saw all the bones on my back because I had no muscle left. Then stairs became hard to climb, and sometimes I would step off a curb and crumble down. I’ve been in a wheelchair for 3 years now. I can still do most things at home. I just passed my hand control driving test, so I go out to play cards 4 times a week. And I still fish out of my wheelchair from a pontoon boat!
Chuck Joosten
Sarnia, ON, Canada

At 55 now, it has been almost 25 years that I’ve lived with muscular dystrophy. In younger years, I was very active in sports. Today, I have no strength in my hamstrings and lower quadriceps. I never felt defined by my disease. For a long time, I was able to operate without others realizing. I have a great career, amazing vacations, and a wonderful family. My brother has the same disease. Not many are fortunate to have someone close who understands our daily struggles. We are a diverse community. I draw strength from everyone’s stories. None of us asked for the hand we were dealt, but together we can play our cards in a way that will let us live life well.
Mike Martin
Princeton, NJ, United States

I started having weakness at age 25 in 2015. Four years later at 29 I was diagnosed with LGMD2L. It’s hard to comprehend this disease because symptoms vary so much from person to person. I went from perfect physical strength to wheelchair dependent in 9 years. At age 34 I refuse to let LGMD2L keep me down and define who I am. I have a wife and 3 beautiful children that look up to me. Anything you put your mind to is possible – I feel that every morning! My mindset is to #beunstoppable
Buck Strode
Eugene, OR, United States

In 2020, I went to urgent care with numbness in my leg, starting my diagnosis journey. I was diagnosed with LGMD2L 6 months later by genetic testing, and the numbness turned out to be unrelated. My weakness started in my calves, which is rare. Now at age 38, I have trouble walking on my toes and experience muscle fatigue when I over exercise. I’m very proactive with taking care of myself, learning exercises that strengthen without overdoing it. I travel as often as possible while looking forward to the advancement of technology and treatments for LGMD.
Brittany Kerrigan
Denver, CO, United States

At about 40 years old I noticed I couldn't get up on tiptoes. I went through several diagnoses and my doctor says I don't fall into a typical subtype. I can still walk short distances with my cane and I only fell once this year, but I do get very fatigued with any exertion. I’m hopeful for some treatment soon so that I can at least not continue to decline. I have to continually adapt to my circumstances. Lately, it's "touching" walls, tables, whatever to feel safe. I notice a tiny bit more weakness every day but I’m thankful for all the things I can still do.
Tom Taylor
Platte City, MO, United States

I started having muscle weakness in my left leg at 47 years old, in 2006. It was a strange feeling, having always been into physical fitness and weightlifting. In 2006, LGMD2L/R12 had not yet been discovered. By 2011, we confirmed a diagnosis and a few years later I started the LGMD2L Foundation with the purpose of building a registry of people with this genetic mutation. My journey has been almost 20 years and I continue to stay independent by trying to stay ahead of the losses with assistive technology and adaptations as needed. I’m hopeful we will find better ways to deal with all genetic disorders.
Ralph Yaniz
Chicago, IL, United States
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