06/24/2016

LGMD "Entrevista en primer plano"

Nombre:  Donna-Marie      Edad: 32 años

País: United Kingdom

Subtipo LGMD: LGMD2i

¿A qué edad le diagnosticaron:

I stared tests at 12 years old, had a Muscular Dystrophy diagnosis at 13 and the subtype a few years later.

¿Cuáles fueron sus primeros síntomas?:

Generally being slower than other children in PE lessons. My teachers noticed that I couldn’t keep up but knew I was too much of a goody two shoes that I had to be trying my hardest!

¿Tiene otros familiares que padezcan LGMD?

Nope, I’m 100% unique J

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

The greatest challenge for me is how it affects me mentally; I know that I am lucky with my LGMD and that I could have much bigger problems so I try not to complain too much about it but  I did spend a couple of years wanting to hide from the people who stare at me and my limp. My boyfriend of 4 years has changed my attitude to my disability more than I could have ever imagined and although I don’t care about people looking at me anymore, I sometimes struggle when we go out as I feel embarrassed for him when people stare at us and feel like he should be with someone “normal” at his age.

I also hate that I can’t storm off during an argument, especially if I’m sat down on a low chair, ha ha!

¿Cuál es su mayor logro?:

I’d love to say that my greatest achievement is something to do with a career but I have to say that in that department I don’t have much to brag about. But I find it an accomplishment that I manage to keep going and stay positive. I have a modest career but I do still work and socialize.  I don’t try to hide away anymore feeling like Quasimodo!

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

LGMD has made me grateful for the amazing people I have in my life. I could not wish for a better family, partner or friends.

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

I’d like the world to know that LGMD doesn’t affect my brain or my eyes!

I don’t need to be talked to like a child and I can see the nudges, whispers and stares.

 

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

There are so many things I could list here but the truth is that I think the very first thing I would do is go out and celebrate with as many drinks as I could handle and not worry that if I fall down, I stay down! And maybe throw in dancing on a few bars J

But as that was a pretty rubbish answer I’d like to add that afterwards I’d go away on a nice holiday with my boyfriend and family where none of them had to worry about if the ground was too uneven, or if there are any steps, or that I can’t walk on the beach or get in/out of a pool or up from a chair.

 

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