الأفراد الذين يعانون من مرض التصلب اللويحي: كارين

11/19/2015

الاسم:  Karen   AGE: 61 yrs. oldLGMD1B - Karen

البلد: الولايات المتحدة الأمريكية

النوع الفرعي LGMD: LGMD1B / Laminopathy

 

في أي عمر تم تشخيصك:

I was diagnosed when I was 54 yrs. old.

ما هي أعراضك الأولى:

My first symptoms included:  falling, inability to climb stairs and difficulty lifting.

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

My sister, her son and his daughter,  her daughter, and a brother all have the same diagnosis.  There have been 2 that were also tested and do not have it.  LGMD1B has an autosomal dominant inheritance pattern which means that typically this disease appears in every generation without skips.

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

The greatest challenges for me include:  getting around, being able to get up when I sit, bathroom problems, lifting, being able to reach items, loading walker in car alone, walking, shopping, and getting dressed.

ما هو أعظم إنجازاتك:

For me, my greatest accomplishments include raising my kids and working with school children for 18 years.

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم:

It makes me more sympathetic to others and their issues.  I am feeling blessed to have family members around.  I  appreciate what I have left.

ما الذي تريد أن يعرفه العالم عن LGMD

Not all disabilities are immediately visible. Some of us might not look like anything is wrong and yet people judge us. I get plenty of stares when I park in a handicap parking space. I get the look…until I have to get a cart to even walk.    I wish that more people knew how to help us –  when we fall, etc.

It is frustrating that a lot of people do not know and understand the difference between MD and MS.  I say I have MD and they still say MS.

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

I would want to be able to hold as well as sit down and play with my granddaughter.

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