LGMD "Spotlight interview"

Имя:  Dylan                                  Возраст:  28 years old

Страна:  United States of America

LGMD Подтип:  LGMD 2J / R10 Titin-related

В каком возрасте вам был поставлен диагноз: 

Диагноз мне поставили в возрасте 23 лет.

Каковы были ваши первые симптомы: 

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.

Есть ли у вас другие члены семьи, страдающие LGMD: 

Nope. I am the one and only!

Что, по вашему мнению, является наибольшей проблемой в жизни с 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!

Какое ваше самое большое достижение:

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!

Как LGMD повлиял на то, что вы стали тем человеком, которым являетесь сегодня:

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.

Что вы хотите, чтобы мир узнал о 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!

Если бы ваш LGMD можно было "вылечить" завтра, что бы вы хотели сделать в первую очередь:

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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