"مقابلة في دائرة الضوء"

الاسم:  Ralph    العمر: 58 Yrs. Old

البلد: الولايات المتحدة الأمريكية

النوع الفرعي لـ LGMD  LGMD2L /  Anoctaminopathy

 

في أي عمر تم تشخيصك:

I started having symptoms at age 47, back in 2006 and was diagnosed by 2011 when LGMD2L was discovered.

ما هي أعراضك الأولى:

Leg weakness. I was a big weightlifter and in my 30s had been bench pressing 300 pounds and squatting 400 pounds. But I felt weakness in my left leg and I went to the gym and tried to leg press with one leg at a time. My right leg was able to press 250 pounds but my left was lagging at 150 pounds.

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

I have one brother confirmed with 2L. There may be others but we don’t know yet.

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

Getting around in all situations. Stairs are hard. Getting out of a chair is hard. Walking is doable but getting more difficult to do for longer distances. And falls always happen if knees buckle or you trip or slip.

ما هو أعظم إنجازاتك:

I have been doing a great deal of work in the disability arena, including currently being on the MDA National Community Advisory Committee and working with several other organizations while I also start the LGMD2L Foundation.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

When you look at what I list as my greatest achievement you can tell that having LGMD2L has led me to work for so many people with disabilities of all types.

ما الذي تريد أن يعرفه العالم عن LGMD:

That we are getting closer and closer to some real treatments and cures and if we all work together, this achievement of possibly eradicating muscular dystrophy would help so many people and families, present and future.

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

I would begin to work out again like in my youth and focus on building real strength and health while enjoying traveling and the beauties of the world.

 

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

* * * * يرجى إبداء الإعجاب والتعليق ومشاركة هذا المنشور للمساعدة في زيادة الوعي بمرض التهاب اللثة الغدد اللمفاوية الجلدي!