04/03/2015

الاسم:  Lacey    العمر: 42

البلد: United States

النوع الفرعي LGMD: LGMD2i

 

في أي عمر تم تشخيصك:

I was diagnosed with Muscular Dystrophy at 16 and LGMD2i at 34. Both diagnosis’ came over the phone. In hindsight, I wish the doctors would have told me in person, I had so many questions and was scared.

ماذا كانت أعراضك الأولى:

The first symptoms I noticed were painful leg cramps when running and not being able to keep up with the other kids. I was told I was lazy and to try harder in PE and in softball. I remember thinking, “I am trying as hard as I can, how do I make myself go faster like the other kids?”

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

No, I don’t have any other family members with LGMD.

ما هي في رأيك أكبر التحديات التي تواجهك في التعايش مع مرض الانسداد الرئوي المزمن:

The constant changes and trying to find ways to adapt to my new normal.

ما هو أعظم إنجازاتك:

My greatest accomplishment is living each day as it comes with compassion and courage, being a wife to my supportive husband, and a mom to our loving girls.

كيف أثّر عليك مرض التصلب الجانبي الضموري العضلي الجانبي الضموري لتصبح الشخص الذي أنت عليه اليوم:

LGMD has forced me to slow down, to become present and aware. I am a stronger, more empathetic person because of this disease. I have learned to cry and laugh at the same time.

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

I would want the world to have more awareness of LGMD, especially doctors. I know for many of us, the road to getting a diagnosis is a long one and it doesn’t have to be. Some LGMD’s have cardiac and pulmonary issues and I think it’s essential to have knowledgeable doctors monitoring and providing support.

إذا كان بالإمكان "علاج" مرضك بالاضطراب العضلي الجانبي الغدي غدًا، فما هو أول شيء تريد القيام به:  The first thing I would want to do, is run-I wish I could remember what it feels like.  Sometimes when I’m driving in my scooter, I close my eyes and pretend I’m running-it gets a bit dangerous 🙂