LGMD "INTERVISTA SPOTLIGHT" 

Nome:  Tatyana   Età: 33 anni

Paese: Russia

Sottotipo LGMD:  LGMD 2A / R1 Calpain3-related

A che età è stata fatta la diagnosi:

I was diagnosed with an unknown subtype of LGMD at 14-15. When I was 27 or 28, my diagnosis was confirmed genetically.

Quali sono stati i primi sintomi:

My first symptoms were difficulty with running, climbing stairs and also I never could do pull-ups.

Avete altri familiari affetti da LGMD:

No, I’m the only one with LGMD in my family.

Quali sono, secondo lei, le sfide più grandi da affrontare nella convivenza con la LGMD?:

Acceptance was much harder than even physical disability. You’re rare, you’re different. You don’t belong to any common social group. You don’t have anybody who can share their own experience and help you. Thanks to the Internet where I meet people with different types of muscular dystrophy and who know how it feels. Now I understand the importance of being a part of community where one can find support.

And the second challenge is a lack of accessibility. I always have to plan every my step, every my route.

Qual è il suo più grande risultato:

I don’t know J My life is quite ordinary: I work, I learn new things. Love my family and friends. I think that my greatest accomplishment for myself is to overcome my fear of being dependent because of progressive loss of strength. It doesn’t frighten me anymore. Now I just search ways how to make my life with LGMD easier.

In che modo la LGMD l'ha influenzata nel diventare la persona che è oggi:

It changed me to the core. I have more empathy, I’m more tolerant. I value things that usually are taken for granted.

Cosa volete che il mondo sappia della LGMD?:

I want the world to know that LGMD is a progressive disease and it takes time to get used to it. And I want the world to know that the life with LGMD can be full of happiness as any other life.

Se la vostra LGMD potesse essere "curata" domani, quale sarebbe la prima cosa che vorreste fare?:

I would dance waltz! And also I would run! Both things – as fast as I can to feel wind!

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