"مقابلة في دائرة الضوء"

الاسم:  Karen  العمر: 54 Yrs. old

البلد: الولايات المتحدة الأمريكية

النوع الفرعي LGMD:  LGMD 2I

 

في أي عمر تم تشخيص حالتك الصحية؟

تم تشخيص إصابتي بالمرض في سن 33 عامًا.

ما هي أعراضك الأولى؟

My first symptom was an overall weakness compared to other kids in gym class in grade school.  High School gym class was even worse.  I experienced tight hamstring and calf muscles.  My calves were large. Next was the noticeable change in my gait.

هل لديك أفراد آخرون من عائلتك مصابون بداء تضخم الغدد اللمفاوية العضلية؟

لا، أنا الفرد الوحيد في العائلة الذي تم تشخيص إصابته بداء تضخم الغدد اللمفاوية الجنيني.

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

The greatest challenges of living with LGMD are completing daily personal and household tasks, managing activity and rest, being prepared to access public spaces, and planning for future needs.

ما هو أعظم إنجازاتك:

With the love and support of my family and friends, I embrace and experience life in spite of ever changing limitations and obstacles.  That is my greatest accomplishment.

How has LGMD influenced you into becoming the person you are TODAY?

Living with LGMD has formed me into an accepting, determined, resourceful, humble, and grateful person. I learned to accept my diagnosis and realize that, as it progresses, it provides me with the opportunity to grow as a person.

ما الذي تريد أن يعرفه العالم عن LGMD?

LGMD is a progressive disease.  It affects every thought that goes into every motion of every day.  Continued research and development for a cure, treatment, and assistive devices are essential.

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 Rollerblade!

 

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