名称:  Ralph  年龄: 24 yrs. old

国家: South Africa

LGMD 子类型: LGMD2B

 

您在几岁时被确诊:

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

您最初的症状是什么？:

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.

您是否有其他家庭成员患有 LGMD：

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.

您认为 LGMD 患者在生活中面临的最大挑战是什么？:

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.

您最大的成就是什么？:

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 是如何影响您成为今天的自己的？

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.

您希望世界了解 LGMD 的哪些方面？:

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.

如果您的 LGMD 明天就能 "治愈"，您首先想做的是什么？:

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

如需阅读更多 "LGMD 焦点访谈"，或自愿参加即将举行的访谈，请访问我们的网站： https://www.lgmd-info.org/spotlight-interviews