LGMD “SPOTLIGHT INTERVIEW” 

Name:  Tatyana   Age: 33 yrs. old

Country: Russia

LGMD Sub-Type:  LGMD 2A / R1 Calpain3-related

At what age were you diagnosed:

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

What were your first symptoms:

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

Do you have other family members who have LGMD:

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

What do you find to be the greatest challenges in living with 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.

What is your greatest accomplishment:

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.

How has LGMD influenced you into becoming the person you are today:

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

What do you want the world to know about 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.

If your LGMD could be “cured” tomorrow, what would be the first thing that you would want to do:

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

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