"مقابلة في دائرة الضوء"

الاسم:  Kelci   العمر:: 23 سنة

البلد: استراليا

النوع الفرعي LGMD (if known):  LGMD2J – Titinopathy

 

في أي عمر تم تشخيصك:

I was just recently diagnosed at the age of 23.

ما هي أعراضك الأولى:

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.

هل لديك أفراد آخرون من عائلتك مصابون بداء تضخم الغدد اللمفاوية الجنيني:

Yes, one sibling does.

ما هي في رأيك أكبر التحديات التي تواجهك في التعايش مع داء الليثيوم المتعدد الكيسات؟:

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.

ما هو أعظم إنجازاتك:

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.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

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!

ما الذي تريد أن يعرفه العالم عن 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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