INDIVIDUAL WITH LGMD: Robert

12/4/2015:

الاسم:  Robert   العمر: 71 yrs. oldUnknown -Robert P

البلد: كندا

النوع الفرعي LGMD: Unknown

 

في أي عمر تم تشخيصك:

I was diagnosed when I was 42 yrs. old.

ما هي أعراضك الأولى:

I did not walk until I was 24 months old.  As a child I could not run like others but it was believed at the time to be caused by asthma.  I have never been physically strong.

هل لديك أفراد آخرون من عائلتك مصابون بداء الليثيونيا الغدد اللمفاوية:  

Thankfully, no.  I am the only person in my family diagnosed with LGMD.

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

One of the greatest challenges is the high cost of aids to keep one going with a reasonably good quality of life.

ما هو أعظم إنجازاتك:

My greatest accomplishment is  the friendships I have developed.  

كيف أثرت عليك LGMD لتصبح الشخص الذي أنت عليه اليوم

I believe living with LGMD has taught me patience, organization, empathy for others, and humor.

ما الذي تريد أن يعرفه العالم عن LGMD

As my disability has progressed and more help is required to keep me active, I have realized that you cannot be poor and have a good quality of life when you are afflicted with a debilitating condition like LGMD, without a lot of assistance, both financial and physical.   Not everyone is as fortunate as I to work a full career and be able to plan for retirement.  Please help to find a treatment or cure.

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

I want to go for a walk along the roads and in the fields and forest around my home community.    I have not done that in over 50 years ….. and I miss it.  Also, I would like to take my wife dancing; we have not been able to do that since the year we met (1986) and I think she misses it.

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