12/10/2015

الاسم:  Michal   العمر: 35 yrs. old

البلد: Poland

النوع الفرعي LGMD: Unknown

 

في أي عمر تم تشخيصك:

I was diagnosed when I was 25 years old.

ما هي أعراضك الأولى:

When I was a baby, my neck muscles were too weak and I had difficulty holding my head up.  I was delayed and didn’t start to walk until I was 4year old.  I stopped walking at the age of 14.

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

NO , I’m the only person in my family who has this disease.

ما هي في رأيك أكبر التحديات التي تواجهك في التعايش مع داء الليثيوم المتعدد الكيسات؟: For me the greatest challenge is that I cannot do some things such as walking, running. stand without help, get dressed, etc.   I tried to control my activities so that I have enough energy to do the activities that I want to do.

ما هو أعظم إنجازاتك:

One of the biggest achievement in my life is that I have real great parents, friends, and colleagues who encourage me to live a fairly optimistic life and let me forget about my disability.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

I have become more insensitive to pain and I’m not fearful of any challenges

ما الذي تريد أن يعرفه العالم عن LGMD:

I want the world to know that people with LGMD may need more help to live independently – such as a personal care attendant,  improved access to adaptive and assistive equipment as well as medicines.  A cure and treatment is needed to treat all the LGMD patients.

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

I think if I were cure tomorrow, I would run and do everything I never could do!

 

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