03/28/2016

LGMD "ENTREVISTA EM DESTAQUE"

Nome:  Emily     Idade: 29 anos

País:  United Kingdom

LGMD Sub-tipo: LGMD2B

 

Com que idade foi diagnosticado:

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

Quais foram os seus primeiros sintomas:

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

Tem outros familiares que sofrem de LGMD:

No, it’s just me – all by myself!

Quais são, na sua opinião, os maiores desafios de viver com a 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.

Qual é a sua maior realização:

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.

Como é que a LGMD o influenciou a tornar-se a pessoa que é hoje?

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!

O que quer que o mundo saiba sobre a LGMD:

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

Se a sua LGMD pudesse ser "curada" amanhã, qual seria a primeira coisa que gostaria de fazer?:

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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