03/28/2016

LGMD "INTERVISTA SPOTLIGHT"

Nome:  Emily     Età: 29 anni

Paese:  United Kingdom

Sottotipo LGMD: LGMD2B

 

A che età è stata fatta la diagnosi:

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

Quali sono stati i primi sintomi:

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

Avete altri familiari affetti da LGMD:

No, it’s just me – all by myself!

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la 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 è il suo più grande risultato:

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.

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

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!

Cosa volete che il mondo sappia della LGMD?:

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

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

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!

 

Per leggere altre "interviste LGMD Spotlight" o per proporsi come volontari per una prossima intervista, visitate il nostro sito web:  https://www.lgmd-info.org/spotlight-interviews