07/29/2015:

الاسم: Patricia  العمر:  26 yrs old

البلد: الولايات المتحدة الأمريكية

النوع الفرعي LGMD: LGMD2A / اعتلال الكالباينوباثي

 

في أي عمر تم تشخيصك:

I was diagnosed with MD when I was 12 years old.

ماذا كانت أعراضك الأولى:

First symptoms were toe walking, arms not going straight, limping gait, and not gaining weight.

هل لديك أفراد آخرون من عائلتك مصابون بالتهاب الغدد اللمفاوية الروماتويدي:

No one in my family has Muscular Dystrophy or LGMD.

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

The greatest challenge is not being able to do certain things such as Walking, Running, Getting out of bed on my own, Bathing on my own, Cooking dinner, Playing with my nephew on the floor. Everything I do is a challenge.

ما هو أعظم إنجازاتك:

Greatest accomplishment would be getting married to a wonderful man and hopefully soon starting a family, also when I got my power chair and was able to cook dinner for the first time in 2 years, and being able to go outside with my husband.

كيف أثّر بكِ مرض التصلب الجانبي الضموري في أن تصبحي الشخص الذي أنتِ عليه اليوم:

It has made me realize that even though I am limited on things I can do, with the right tools I can still do some of those things just in a different way.

ما الذي تريدين أن يعرفه العالم عن مرض التصلب الجانبي الضموري المتعدد:

Educate yourself on LGMD and some of the struggles people go through. Don’t judge someone on how they look. Every form of MD has a different look but that doesn’t make the person. their personality makes the person. If you see someone struggling whether in a wheelchair or walking offer to help, I know for me when someone asks if they can help me I am very grateful for it.

إذا كان بالإمكان "علاج" مرضك بالاضطراب العضلي الجانبي الغدي غدًا، فما هو أول شيء تريد القيام به:

I would run as fast as I can down the road and around the block, I would jump up and down and maybe even do flips. I dream of the day I can do this.