INDIVIDUAL WITH LGMD: Rebecca

04/30/2016  "مقابلة في دائرة الضوء"

 

الاسم:  Rebecca    العمر:: 29 سنةLGMD2A - Becc

البلد:  Australia

النوع الفرعي LGMD:   LGMD2A / Calpainopathy

 

في أي عمر تم تشخيصك:

I was diagnosed with LGMD2A when I was 26 years old.

ما هي أعراضك الأولى:

My first symptoms included:  difficult climbing stairs and inclines as well as not being able to rise without using my hands to me up.

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

I am the only one out of 4.

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

The greatest challenge for me is battling fatigue.  It can become really hard to find a balance between doing too much and not doing enough.  I have found that I’m adapting to change basically every year.  It is also a challenge to not be so hard on myself when I see others doing activities which I can’t do.  It can be challenging to ask for help when I cannot fulfill a task on my own.  Pain – I can’t remember the last time that I woke up and felt no pain, discomfort and feeling fragile.

ما هو أعظم إنجازاتك:

My daughter is 10 years old and she is my greatest accomplishment.  I might not be good at some things in life but I can honestly say I’m the best Mum!  She is my life.  And, as she is growing up, she is starting to look after me in more ways than one.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

I might be becoming physically weaker in my body but I have become stronger mentally.

ما الذي تريد أن يعرفه العالم عن LGMD:

That is strips away everything that you know.

I also want them to know about Coalition to Cure Calpain 3 – the organization focused on finding a cure and treatment for LGMD2A.

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

If I was “cured” tomorrow, I would go out with my family with not limits.  I would run around with my daughter and climb 100 stairs.

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