04/08/2016 – LGMD “Spotlight Interview”

الاسم:  Mary   العمر: 46

البلد: الولايات المتحدة الأمريكية

النوع الفرعي LGMD: LGMD2A / Calpainopathy

 

في أي عمر تم تشخيصك:

I was diagnosed with LGMD when I was 25 years old.

ما هي أعراضك الأولى:

My first symptoms were being unable to rise from a seated position without placing weight on my arms for support and difficulty in climbing stairs.

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

No, I am the only family member to ever be diagnosed with LGMD.

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

The greatest challenges for me are trying to remain independent with daily activities.  The disease progression is slow but not being able to do what you once were able to do is hard to adjust to.

ما هو أعظم إنجازاتك:

My greatest accomplishment was marrying my husband. I became a widow in 2014.  He was one of my greatest supporters.  He inspired me to be the best person I could be.  My family and friends are encouraging and a great support.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

I take nothing for granted.  Each day is a gift – some better than others.  I became more outgoing once my mobility became limited as I still want to experience and be active in life despite my diagnosis.

ما الذي تريد أن يعرفه العالم عن LGMD:

LGMD is a muscle wasting disease.

Help those you can, become educated and treat everyone respectfully.

إذا كان من الممكن "علاج" مرضك بالتهاب الغدد اللمفاوية الروماتيزمية غدًا، فما هو أول شيء تريد القيام به:

If a cure was found tomorrow, I would run, dance and jump!  All the things that I can no longer physically do would be top priorities!

 

لقراءة المزيد من "مقابلات "LGMD Spotlight" أو للتطوع للظهور في مقابلة قادمة، يرجى زيارة موقعنا على الإنترنت على: https://www.lgmd-info.org/spotlight-interviews