LGMD "Spotlight interview"

Имя:  Kelci   Возраст: 23 yrs. old

Страна: Australia

LGMD Подтип (if known):  LGMD2J – Titinopathy

 

В каком возрасте вам был поставлен диагноз:

I was just recently diagnosed at the age of 23.

Каковы были ваши первые симптомы:

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.

Есть ли у вас другие члены семьи, страдающие LGMD:

Yes, one sibling does.

Что, по вашему мнению, является наибольшей проблемой в жизни с 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.

Какое ваше самое большое достижение:

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.

Как LGMD повлиял на то, что вы стали тем человеком, которым являетесь сегодня:

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!

Что вы хотите, чтобы мир узнал о 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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