LGMD “Spotlight interview”

Name:  Kelci   Age: 23 yrs. oldlgmd2j-kelci

Country: Australia

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


At what age were you diagnosed:

I was just recently diagnosed at the age of 23.

What were your first symptoms:

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.

Do you have other family members who have LGMD:

Yes, one sibling does.

What do you find to be the greatest challenges in living with 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.

What is your greatest accomplishment:

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.

How has LGMD influenced you into becoming the person you are today:

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!

What do you want the world to know about 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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