LGMD "Wywiad w centrum uwagi"

Imię i nazwisko:    Adriana    Wiek:  48 years old

Kraj:   Argentina

Podtyp LGMD: LGMD2B

 

WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed at the age 20.

WJAKIE BYŁY PIERWSZE OBJAWY:

My first symptoms included: difficulty climbing stairs, tiredness, and some falls.

CZY MASZ INNYCH CZŁONKÓW RODZINY, KTÓRZY CHORUJĄ NA LGMD?  

Yes, my brother also has LGMD.

WCO UWAŻASZ ZA NAJWIĘKSZE WYZWANIE W ŻYCIU Z LGMD?:

In the beginning the greatest challenge was the process of accepting the disease. Given that I am a very independent person with a very active life, today my biggest challenge is making my desires compatible with what is possible, and finding strategies that permit me to reach my goals, understand my limits, and find solutions.

WJAKIE JEST TWOJE NAJWIĘKSZE OSIĄGNIĘCIE?:

Being able to overcome the obstacles I was facing, being a mother, being surrounded by my loved ones, and working every day at something I like.  Working in an NGO for neuromuscular diseases, ADM Argentina, of which I was its president in 2011 and 2016.

JAK CHOROBA ALZHEIMERA WPŁYNĘŁA NA TO, ŻE STAŁEŚ SIĘ OSOBĄ, KTÓRĄ JESTEŚ DZISIAJ:

I had to redefine my projections for my future and in what fields I wanted to work, that was a big challenge. But it was possible, I was able to grow as a person, to live my daily life with more interest, to value what life has offered me, and to try to help other who are going through similar situations.

WCO ŚWIAT POWINIEN WIEDZIEĆ O LGMD?:

I would like the whole world to know about the existence of LGMD, its possible treatments, above all fight for early detection to improve our quality of life.  Support diagnosis and research.

IGDYBY JUTRO MOŻNA BYŁO "WYLECZYĆ" CHOROBĘ ALZHEIMERA, CO BYŁOBY PIERWSZĄ RZECZĄ, KTÓRĄ CHCIAŁBYŚ ZROBIĆ?:

I would go skating again.

 

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