03/28/2016

LGMD "ENTREVISTA EN PRIMER PLANO"

Nombre:  Emily     Edad29 años

País:  United Kingdom

Subtipo LGMD: LGMD2B

 

¿A qué edad le diagnosticaron:

I received confirmation of my LGMD2B diagnosis at the age 28 but at the age of 24 it was already suspected.

¿Cuáles fueron sus primeros síntomas?:

My first symptom was struggling to climb stairs and I also noticed that I couldn’t stand on tip toes to reach books on my bookshelf

¿Tiene otros familiares que padezcan LGMD?

No, it’s just me – all by myself!

¿Cuáles crees que son los mayores retos de vivir con LGMD?:

There are many challenges. Like trying to be accepted as “disabled” when I don’t use a wheelchair. I find people don’t want to talk to me about it in general, which can be very isolating! At times I get self-conscious and anxious. Falling over in front of people is the worse and struggling to do things I once could is quite sad. I miss being able to run! Also the need to try and explain yourself. Having the odd wobble and feeling pathetic or weak.

¿Cuál es su mayor logro?:

At the moment, leaving home and living independently in the countryside. I also volunteer for Muscular Dystrophy UK as a peer supporter, which to me is an amazing accomplishment.

¿Cómo le ha influido la LGMD para convertirse en la persona que es hoy?

Having LGMD has definitely given me a different outlook! I’ve learned to appreciate smaller things in life and become more determined to achieve things on any scale. I feel very positive and want to turn my diagnosis around to focus on the good things not the bad. It’s made me more aware and empathetic, I want to help others like myself. It’s aided my ‘wicked’ sense of humor too!

¿Qué quiere que el mundo sepa sobre la LGMD?:

Everything! I just want people to understand the complexities of these conditions and the condition itself.

Si su LGMD pudiera "curarse" mañana, ¿qué sería lo primero que desearía hacer?:

This is a tough question, there are so many!

I’d probably want to run first but also get on a sporty motorbike and learn to ride!

 

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