05/21/2015:

 

Imię i nazwisko:  Andrea                 Wiek: 17 yrs. old

Kraj: Norway

Podtyp LGMD: LGMD 1B / Laminopathy

W jakim wieku zostałeś zdiagnozowany?:

I was about 6 months old when they discovered that something was wrong, but it wasn’t until I was about 2 years old that they decided it was muscle dystrophy. I have probably had the disease my whole life. I was 7 years old when I got the diagnosis LGMD 1B.

Jakie były pierwsze objawy?:

I couldn’t hold my head up when I started sitting on my own.

Czy masz innych członków rodziny cierpiących na LGMD?

No, I am the only one with LGMD in my family. Both my parents have been tested and the results showed that I didn’t inherit it, it was from a mutation.

Co uważasz za największe wyzwanie w życiu z LGMD?:

The greatest challenges are that I can’t do anything on my own. I need help with practically everything, like getting dressed, getting in and out of bed, and picking up stuff.

Jakie jest twoje największe osiągnięcie?:

My greatest accomplishment is my mind. How I have a positive look on everything.

Jak LGMD wpłynęło na to, że stałeś się osobą, którą jesteś dzisiaj:

It has made me appreciate the small pleasures and made me a very positive person.

Co chciałbyś, aby świat dowiedział się o LGMD?:

I want the world to know that I am not chained to my wheelchair, the wheelchair is the most helpful aid I have. Without it I would be chained, it is my freedom. When some people see me they only see the wheelchair, the noise around me, and not me. The disease only affects my muscles and not my brain, I am a normal 17-year-old girl.

Gdyby jutro można było "wyleczyć" chorobę LGMD, co byłoby pierwszą rzeczą, którą chciałbyś zrobić?:

I would jump, run up and down the stairs, pick up things, do all the normal things I never have been able to do!