"مقابلة في دائرة الضوء"

الاسم:  Fred   العمر: 36 yrs. old

البلد: الولايات المتحدة الأمريكية

النوع الفرعي LGMD:  LGMD2A  / Calpainopathy

 

في أي عمر تم تشخيصك:

تم تشخيص إصابتي بالمرض في سن 13 عامًا.

ما هي أعراضك الأولى:

Looking back I was always slightly slower than the other kids but I can’t say there was one symptom which my parents or I noticed.  I was diagnosed on a fluke. I had gone skiing with a church group and ultimately broke my leg.  When I went to the hospital emergency room for my broken leg, a Dr noticed that I was not as strong as I should have been at that age.  That resulted in a muscle biopsy.  Initially, I was diagnosed with Becker’s MD, this was all pre-DNA testing.

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

لا، أنا الوحيد.

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

The greatest challenge for me is not being able to hold my 7-month old without assistance. Constantly having to advocate for me as it pertains to this condition.  I never noticed how many people have “ableist” attitudes. The last for me would be not being able to freely visit friends and family.

ما هو أعظم إنجازاتك:

I have so many accomplishments, but if I could only choose one I’d say working my way off of SSI. After my diagnosis, I had given up hope of ever having a job, a car, a home, a family of my own etc. Today, I am a state police dispatcher, I drive, I have a beautiful family, I’m currently looking to purchase my first home, and I’m optimistic that when the time comes and I no longer can physically do the job I have that God will provide another opportunity.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

LGMD has taught me how to fight for what I want.  It’s taught me that I’m never as limited as I may think.  Anything is possible.

ما الذي تريد أن يعرفه العالم عن LGMD:

That LGMD has not been cured yet but, with their help, it can be.

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

Pick my little boy up, give him a tight hug, toss him up in the air and catch him.

 

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