LGMD “SPOTLIGHT INTERVIEW”

Name:  Osman

Age:  30 yrs. old

Country:  Turkey

LGMD Sub-Type:  LGMD2D/R3 Alpha sarcoglycan-related

At what age were you diagnosed?

I was diagnosed at the age of 16.

What were your first symptoms?

Symptoms started showing around the age of seventeen. I felt the need to rest after a bit of running. I was tired while climbing stairs.  After a few years, I started to hold on while climbing stairs or getting up from a seated position.  At the age of 25, I started not being able to lean forward and started to walk slowly so as not to fall.

Do you have other family members who have LGMD?

Yes, my sister has also been diagnosed with LGMD2D/R3.

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

The greatest challenges involve activities of daily living. Not being able to go where i want with my family and to climb stairs without holding onto something.

What is your greatest accomplishment?

My greatest accomplishment has been a computer engineer and helping to establish the LGMD Turkey association

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

I became a person with high awareness. I try to help other people in every situation, to the best of my ability. I try to announce my disease and other diseases to other people.

What do you want the world to know about LGMD?

I want the world to know everything about LGMD – symptoms, challenges, management, rehabilitation, latest scientific research, and the organization working to raise awareness as well as providing some relief to the individuals and families affected by this progressive neuromuscular disease.

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

If I get cured, I want to run non-stop and to climb stairs in places I feared before.