LGMD “Spotlight interview”

Name:  Dylan                                  Age:  28 years old

Country:  United States of America

LGMD Sub-Type:  LGMD 2J / R10 Titin-related

At what age were you diagnosed: 

I was diagnosed at the age of 23.

What were your first symptoms: 

I started noticing how “normal” things got increasingly difficult for me to do – walking up flights of stairs, standing up after sitting on the floor, jumping and squatting. I had constant muscle fatigue and would randomly fall. After I lost the ability to run and the falls became more frequent, we knew something was up.

Do you have other family members who have LGMD: 

Nope. I am the one and only!

What do you find to be the greatest challenges in living with LGMD:

It is a cruel disease because not only does it naturally take away our strength and mobility, it tries to take away our hope and our control over our own life. While our bodies deteriorate daily with no treatment or cure in sight, it is easy to feel defeated and neglected. I believe that to be one of its biggest challenges – keeping our head above water. That is why it is so especially important to stay positive and live life to YOUR best ability, no matter what that looks like!

What is your greatest accomplishment:

I have been incredibly lucky and fortunate to be able to travel the country (44 states) playing music with some of the best guys in the world. Not sure how much longer I will be able to do that, but it has been a dream come true. I am also a proud graduate of Texas Christian University (Go Frogs) and I was a state champion in chess when I was a boy. I also think I am a rather good dog dad!

How has LGMD influenced you into becoming the person you are today:

It teaches me new things every single day. I have gained a lifetime’s amount of perspective in such a short time. I have become a better problem solver. I am much more patient with myself and others. I appreciate every moment and every single step that I have left. I smile more and look at the clouds and treat everyone gently now. Try to be someone’s hero. Besides suffering from LGMD, I am the luckiest man alive with the best family and friends anyone could ask for.

What do you want the world to know about LGMD:

That we are people with goals, aspirations, passions, and feelings – just like everybody else. A lot of us were once pretty “normal” too. If everyone knew what hoops and hurdles had to be jumped through for someone with LGMD just to get through their normal daily routine, people would start to understand how tough and resilient our community is. They would realize that this is a community and disease worth fighting for. So be an advocate while researchers and scientists get these mysterious diseases figured out!

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

I would run around in the yard with my dog, dance with a nice and pretty lady, play some baseball with my friends, and probably climb a mountain just because!

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