07/29/2015:

İSİM: Patricia  YAŞ:  26 yrs old

ÜLKE: Birleşik Devletler

LGMD Alt Tipi: LGMD2A / Kalpainopati

 

KAÇ YAŞINDA TEŞHIS KONULDU?:

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

İLK BELIRTILERINIZ NEYDI?:

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

LGMD HASTASI OLAN BAŞKA AILE ÜYELERINIZ VAR MI?

No one in my family has Muscular Dystrophy or LGMD.

LGMD ile yaşamanın en büyük zorluklarının ne olduğunu düşünüyorsunuz?:

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.

EN BÜYÜK BAŞARINIZ NEDIR:

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.

LGMD BUGÜN OLDUĞUNUZ KIŞI OLMANIZDA SIZI NASIL ETKILEDI?

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.

DÜNYANIN LGMD HAKKINDA NE BİLMESİNİ İSTİYORSUNUZ:

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.

LGMD HASTALIĞINIZ YARIN "TEDAVİ" EDİLEBİLECEK OLSA, YAPMAK İSTEYECEĞİNİZ İLK ŞEY NE OLURDU:

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.