Intervista con i riflettori della LGMD

Nome:  Kelci   Età: 23 yrs. old

Paese: Australia

Sottotipo LGMD (if known):  LGMD2J – Titinopathy

 

A che età è stata fatta la diagnosi:

I was just recently diagnosed at the age of 23.

Quali sono stati i primi sintomi:

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.

Avete altri familiari affetti da LGMD:

Yes, one sibling does.

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

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.

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

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!

Cosa volete che il mondo sappia della 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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