LGMD "Spotlight Interview"

Name:    Adriana    Alter:  48 years old

Land:   Argentina

LGMD Unter-Typ:  LGMD2B

 

WHAT AGE WERE YOU DIAGNOSED:

I was diagnosed at the age 20.

WAS WAREN IHRE ERSTEN SYMPTOME:

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

HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE AN LGMD LEIDEN:  

Yes, my brother also has LGMD.

WAS SIND IHRER MEINUNG NACH DIE GRÖSSTEN HERAUSFORDERUNGEN IM LEBEN MIT 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.

WAS IST IHRE GRÖSSTE ERRUNGENSCHAFT?:

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.

WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND?

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.

WAS SOLL DIE WELT ÜBER LGMD ERFAHREN?:

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.

IWENN IHRE LGMD MORGEN "GEHEILT" WERDEN KÖNNTE, WAS WÜRDEN SIE ALS ERSTES TUN WOLLEN?:

I would go skating again.

 

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