LGMD "スポットライト・インタビュー"

名称:  Rodrigo  年齢: 29 yrs. old  

国名:アメリカ

LGMD サブタイプ  LGMD2B / Myoshi ミオパシー

何歳で診断を受けたか:

I was diagnosed with LGMD2B at the age of 24.

最初の症状は？:

My symptoms appeared around the age of 17.

ご家族にLGMDの方はいらっしゃいますか？

I have 2 brothers who show symptoms but have not been diagnosed.

LGMDと共に生きていく上で、最も困難だと感じることは何ですか？:

Mobility is my greatest challenge.

あなたの最大の功績は何ですか？:

My greatest accomplishment is in allowing my artistic talent to come to light.

LGMDは今のあなたにどのような影響を与えていますか？

LGMD has greatly influenced me into becoming the person that I am today.  It has allowed me to see life in a completely different way.  It has forced me to push myself constantly, even for the smallest of tasks, which in turn made me become resilient and persistent.  It has also given me the empathy and I can sympathize with those who are struggling too.  LGMD has made me appreciate every aspect of life and discard the materialistic behavior.

LGMDについて世界に知ってもらいたいことは？:

The world, first of all, needs to know we exist.  Limb Girdle Muscular Dystrophy can and will be cured but not enough people know about it to care.  It is a good thing it affects a small percentage of the population but we are a relatively large group of people who want to still make it in life.  We are also pursuing happiness but need a lot more help from others.  The world needs to know we are still contributing what we can.  We struggle, even minute even putting a piece of bread in our mouth, but we have accepted these challenges and being strong has become our only way of life.

もし明日、あなたのLGMDが "治る "としたら、まず何をしたいですか？:

I would take the fastest route to recovery.  I would take off running as Forest Gump did.  I would tell everyone on my path how much I appreciate moving again in an attempt to bring self-awareness of general health and point out how much we take for granted.  Every step a healthy person takes for granted a person with Muscular Dystrophy wishes they could take.

 

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