الاسم:         Lena              العمر:  44

البلد: الولايات المتحدة الأمريكية

النوع الفرعي LGMD:  Limb-Girdle Muscular Dystrophy type 2J/R10 Titan-related

في أي عمر تم تشخيصك?

I was diagnosed at age 42.

ما هي الأعراض الأولى التي ظهرت عليك؟

As a preschool teacher, I noticed that it was becoming very difficult to get up from the floor. Then I started falling and losing my balance.

هل لديك أفراد آخرون من عائلتك مصابون بداء تضخم الغدد اللمفاوية العضلية؟

My sister and I both have been diagnosed with LGMD subtype 2J, we also think that our father and all our uncles could have had it. (They are all deceased and were never diagnosed.)

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

Not being able to do all the physical activities that I want to do. The uncertainty of the future and if my children will develop LGMD as well. Another challenge I deal with is coping emotionally with the gradual weakening of my legs and limbs.

ما هو أعظم إنجاز لك؟

I am proud of being a mother and a wife. I am also proud of being active in a community social group, participating with “Rock The Vote”, and learning how to use social media to meet people all over the world.

كيف أثرت فيك LGMD لتصبح الشخص الذي أنت عليه اليوم؟

I am more of an advocate for my health. I am more empowered to ask questions and take actions that help me and others that maybe otherwise would be ignored or overlooked.

ما الذي تريد أن يعرفه العالم عن LGMD?

You can still love, laugh, and live a meaningful life with LGMD. The physical limitations of our bodies do not stop us from continuing to learn and experience the world.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want do?

If I could be cured tomorrow, I would drive to the beach and wiggle my toes in the ocean!!!