名称:  Ralph  年齢24歳

国名: South Africa

LGMDサブタイプ: LGMD2B

 

何歳で診断を受けたか:

I was diagnosed at the age of 23 – just after finishing my Rescue Diving Course.

最初の症状は？:

I live a very active, adrenaline pumping lifestyle and after I noticed I was running slower and slower every day, I started training harder and harder as well.  But in the end my body just kept getting weaker and weaker.  After completing my diving I decided to get some help.

ご家族にLGMDの方はいらっしゃいますか？

No, I am the only one and my family took quite a hit when they heard my diagnosis.  Didn’t affect me really.  Just saw it as another challenge.  But after a while, reality really sank in…if you know what I mean.

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？:

Acceptance.  The fact that I can’t do all the activities that I used to do is quite a challenge.  Hard to give up skydiving, white water rafting, and off-roading because it took too much strain on my arms and legs.

あなたの最大の功績は何ですか？:

Living the life most people dream of and being an inspiration to everyone around me.  When you have the right mindset and a strong will there is nothing you can’t accomplish.

There’s a story that inspires me to live a full life.  Publius Horatius Cocles was an officer in the army of the ancient Roman Republic who famously defended the Pons Sublicius during the war between Rome and Clusium.  The poem goes:  Then out spoken brave Horatius, the Captain of the gate:  “To every man upon this earth.  Death cometh soon or late.  And how can man die better than facing fearful odds.”

LGMDは今のあなたにどのような影響を与えていますか？

I always believed that I was unbreakable.  Since my diagnosis, I’ve realized that I am unstoppable.  There’s only life and death and by choosing life, my dreams are only a short breath away.  And I intend to close that gap.

LGMDについて世界に知ってもらいたいことは？:

Never look down on people who suffer from any form of a disease.  The mindset you need to live with and overcome such an obstacle might just be too much for you to handle.

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 start running and never stop until my legs break because for the moment…I’ll be free!

LGMDスポットライト・インタビュー "をもっと読みたい方、またはボランティアでインタビューに参加したい方は、ウェブサイトをご覧ください： https://www.lgmd-info.org/spotlight-interviews