الأفراد الذين يعانون من مرض التصلب اللويحي: مرام

07/26/2016 – "مقابلة في دائرة الضوء"

الاسم:  Maram    العمر: 26 years oldLGMD2E - Maram

البلد: Palestine

النوع الفرعي LGMD: LGMD2E

 

في أي عمر تم تشخيصك:

I was diagnosed with muscular dystrophy at the age of 10.  When I was 26 years old, I received genetic confirmation of my LGMD2E diagnosis.

ما هي أعراضك الأولى:

When I was 3 years old, my parents noticed that my gait was unsteady and it was difficult for me to stand up from the ground.

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

لا، أنا الوحيد في عائلتي.

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

There are so many challenges.  Simple things for many people are my greatest challenges but going to the bathroom and changing my position from side to side while sleeping make me feel so weak.

ما هو أعظم إنجازاتك:

Well, in my country people know nothing about LGMD.  I am trying every day to increase the awareness of the disease by social media.  I have helped many patients in my country and in the Arab world to the genetic test to confirm their diagnosis and to get the equipment that we need to make life a little easier for us.  I have also contacted my patients from around the world and we have become close friends.  They are my greatest accomplishments.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

I think it has made me stronger in one way or another.  I have become more caring for the people around me. I appreciate every little blessing in my life including my great family.  I have become closer to God.  I think it changed me in a good way and I like who I am today.

ما الذي تريد أن يعرفه العالم عن LGMD:

I want them to know that we are not so different form normal people.   What happened that a simple genetic error or mutation has caused me difficulty in moving while they can.  The cause is not so complicated and if we understand that, we can find the treatment.

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

I would like to hug my parents so tightly and never let them go.  I keep thinking how hard life would be without them.

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