LGMD "Primer plano"

Nombre:  Dylan                                  Edad:  28 years old

País:  United States of America

Subtipo LGMD:  LGMD 2J / R10 Titin-related

¿A qué edad le diagnosticaron: 

Me lo diagnosticaron a los 23 años.

¿Cuáles fueron sus primeros síntomas?: 

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.

¿Tiene otros familiares que padezcan LGMD? 

Nope. I am the one and only!

¿Cuáles crees que son los mayores retos de vivir con 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!

¿Cuál es su mayor logro?:

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!

¿Cómo le ha influido la LGMD para convertirse en la persona que es hoy?

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.

¿Qué quiere que el mundo sepa sobre la 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!

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

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!

Para leer más "LGMD Spotlight Interviews" o presentarse voluntario para una próxima entrevista, visite nuestro sitio web: http://lgmd-info.org/spotlight-interviews