INDIVIDUAL WITH LGMD: Kelci

LGMD "Spotlight interview" (en anglais)

Nom:  Kelci   L'âge: 23 anslgmd2j-kelci

Pays: Australie

LGMD Sous-type (if known):  LGMD2J – Titinopathy

 

À quel âge avez-vous été diagnostiqué ?:

I was just recently diagnosed at the age of 23.

Quels ont été vos premiers symptômes ?:

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.

Avez-vous d'autres membres de votre famille atteints de LGMD ?

Yes, one sibling does.

Quels sont, selon vous, les plus grands défis à relever pour vivre avec le 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.

Quelle est votre plus grande réussite ?:

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.

Comment le LGMD vous a-t-il influencé pour que vous deveniez la personne que vous êtes aujourd'hui ?

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!

Que voulez-vous que le monde sache sur le 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.

 

 

Pour lire d'autres "LGMD Spotlight Interviews" ou pour vous porter volontaire pour une prochaine interview, veuillez consulter notre site web à l'adresse suivante : https://www.lgmd-info.org/spotlight-interviews.