Name:  Dilek

Age:  39

Country:  Turkey

LGMD Sub-Type:  LGMD 2D / R3

 

At what age were you diagnosed?

I was diagnosed at the age of 21.

What were your first symptoms?

Initially, I noticed that I was having difficulty climbing stairs.

Do you have other family members who have LGMD?

My brother is 35 years old

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

I can’t get up when I fall down. I can fall with the slightest trip. I have difficulty lifting my arms. I can’t go up or down stairs. My social life is limited.

What is your greatest accomplishment?

My psychology is strong, and I look at life with hope. I fight to support treatment efforts. Because I am a mother, a wife and an education worker.

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

Of course, there are places where it has a negative effect, my social life could be more active and crowded. Unfortunately, I cannot participate in every environment.

What do you want the world to know about LGMD?

In terms of accessibility, I hope that public areas (roads, toilets, cafes, restaurants, etc.) will be accessible to us, that physicians, scientists, associations and most importantly governments will support gene therapy studies and drug studies, and that permanent solutions will be found for us.

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

I have many dreams, such as swimming in the sea with my daughter without fear, taking a course to play a musical instrument, running, playing snowballs, and more. I want to relive the life I had to postpone.