Имя:  Ralph  Возраст: 24 года.

Страна: South Africa

LGMD Подтип: LGMD2B

 

В каком возрасте вам был поставлен диагноз:

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

Каковы были ваши первые симптомы:

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.

Есть ли у вас другие члены семьи, страдающие 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.

Что, по вашему мнению, является наибольшей проблемой в жизни с LGMD:

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.

Какое ваше самое большое достижение:

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.”

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

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.

Что вы хотите, чтобы мир узнал о LGMD:

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.

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

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

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