08/18/2015

الاسم: Martin  العمر: 42 yrs. old

البلد: United Kingdom

النوع الفرعي LGMD: LGMD2A / Calpainopathy

 

في أي عمر تم تشخيصك:

I was diagnosed when I was 23 years old.

ما هي أعراضك الأولى:

I had a fall in a garage, dislocated my knee and that wouldn’t repair itself in the time expected.

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

نعم، أخي الأكبر مصاب أيضًا بداء تضخم الغدد اللمفاوية العضلية المتعدد.

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

My greatest challenges are climbing stairs and trying to get people to understand how hard it is to be an ambulant disabled person that is determined to stay on my feet as long as possible. (and wobbles a bit)

ما هو أعظم إنجازاتك:

Realizing that I could write about Muscular Dystrophy and people listened too! I’ve gone on to raise awareness and vital funds for research, attending the houses of Parliament, making sports and TV personalities aware of these conditions via social media, being recognized and rewarded by MDUK for all my efforts to raise awareness and funds for research, changing my career to be in a position of helping others, being a dad to three great girls, trying to be a good role model and to stay positive all of the time.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

Quite ironically I think that LGMD has made me stronger than what I ever thought I would be, I am extremely determined to let everyone know all about these conditions and make life easier for many others in the future.

ما الذي تريد أن يعرفه العالم عن LGMD:

That it exists would be a good start! It was not until my diagnosis and years later when I started to talk about the condition that it occurred to me that my family, friends and society in general had not heard of ANY type or strain of Muscular Dystrophy and that has to change; it’s imperative that people know about these conditions.

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

To run on a beach as fast as I possibly could (think of the film ‘Chariots of fire’ and to the Vangelis soundtrack too!) and then have the biggest hug with all my girls and my wife.

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