LGMD "Primer plano"

Nombre:  Kelci   Edad: 23 yrs. old

País: Australia

Subtipo LGMD (if known):  LGMD2J – Titinopathy

 

¿A qué edad le diagnosticaron:

I was just recently diagnosed at the age of 23.

¿Cuáles fueron sus primeros síntomas?:

At first I noticed having to consciously think about stepping up on to pavement or ledges. I then noticed that climbing stairs was getting more difficult as well as walking distances.

¿Tiene otros familiares que padezcan LGMD?

Yes, one sibling does.

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

The greatest challenge about living with LGMD is finding daily activities such as walking distances or climbing stairs difficult, as these were things that I once didn’t think twice about. Another challenge for me is having a rare form of Muscular Dystrophy, as there is hardly any information for me to relate to or predict what may happen.

¿Cuál es su mayor logro?:

LGMD is still very new to me as I was only diagnosed 3 months ago, I am still trying to adjust and figure out what living with LGMD is going to mean for my future. My biggest accomplishment is just simply learning how to stay positive and incorporate Muscular Dystrophy into my life.

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

I believe I have learned not to take anything for granted and to appreciate what you have, while you have it. It’s so important to stay positive!

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

I think it’s important to realize that we are still the same person we once were. People should also know that not every day is the same for someone with LGMD, some days we will be better than others and what we can do one day we may not be able to do the next.

 

 

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