LGMD “Spotlight interview”

Nome:  Kelci   Idade: 23 yrs. old

País: Austrália

LGMD Sub-tipo (if known):  LGMD2J – Titinopathy

 

Com que idade foi diagnosticado:

I was just recently diagnosed at the age of 23.

Quais foram os seus primeiros sintomas:

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.

Tem outros familiares que sofrem de LGMD:

Yes, one sibling does.

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

Qual é a sua maior realização:

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.

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

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!

O que quer que o mundo saiba sobre a 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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