08/18/2015

Nome: Martin  ETÀ: 42 yrs. old

Paese: United Kingdom

Sottotipo LGMD: LGMD2A / Calpainopathy

 

A che età è stata fatta la diagnosi:

I was diagnosed when I was 23 years old.

Quali sono stati i primi sintomi:

I had a fall in a garage, dislocated my knee and that wouldn’t repair itself in the time expected.

Avete altri familiari affetti da LGMD:

Sì, anche mio fratello maggiore ha la LGMD.

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la LGMD?:

My greatest challenges are climbing stairs and trying to get people to understand how hard it is to be an ambulant disabled person that is determined to stay on my feet as long as possible. (and wobbles a bit)

Qual è il suo più grande risultato:

Realizing that I could write about Muscular Dystrophy and people listened too! I’ve gone on to raise awareness and vital funds for research, attending the houses of Parliament, making sports and TV personalities aware of these conditions via social media, being recognized and rewarded by MDUK for all my efforts to raise awareness and funds for research, changing my career to be in a position of helping others, being a dad to three great girls, trying to be a good role model and to stay positive all of the time.

In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi:

Quite ironically I think that LGMD has made me stronger than what I ever thought I would be, I am extremely determined to let everyone know all about these conditions and make life easier for many others in the future.

Cosa volete che il mondo sappia della LGMD?:

That it exists would be a good start! It was not until my diagnosis and years later when I started to talk about the condition that it occurred to me that my family, friends and society in general had not heard of ANY type or strain of Muscular Dystrophy and that has to change; it’s imperative that people know about these conditions.

Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?:

To run on a beach as fast as I possibly could (think of the film ‘Chariots of fire’ and to the Vangelis soundtrack too!) and then have the biggest hug with all my girls and my wife.

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