LGMD "Wywiad w świetle reflektorów"

Nazwa:  Kelci   Wiek: 23 yrs. old

Kraj: Australia

Podtyp LGMD (if known):  LGMD2J – Titinopathy

 

W jakim wieku zostałeś zdiagnozowany?:

I was just recently diagnosed at the age of 23.

Jakie były pierwsze objawy?:

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.

Czy masz innych członków rodziny cierpiących na LGMD?

Yes, one sibling does.

Co uważasz za największe wyzwanie w życiu z 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.

Jakie jest twoje największe osiągnięcie?:

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.

Jak LGMD wpłynęło na to, że stałeś się osobą, którą jesteś dzisiaj:

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!

Co chciałbyś, aby świat dowiedział się o 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.

 

 

Aby przeczytać więcej wywiadów "LGMD Spotlight Interviews" lub zgłosić się do udziału w nadchodzącym wywiadzie, odwiedź naszą stronę internetową: https://www.lgmd-info.org/spotlight-interviews.