LGMD “SPOTLIGHT INTERVIEW”

Name:        Sanjana

Age:  55 yrs. old

Country:  India

LGMD Sub-Type:  LGMD2A/R1 Calpain 3 – related

At what age were you diagnosed?

I was diagnosed at the age of 13.

What were your first SYMPTOMS?

Symptoms started showing around the age of five. I would toe walk while climbing stairs or walking uphill. I needed knee support while getting up from a seated position. I would balance on my toes while sitting in a squatting position.

Do you have other family members who have LGMD?

Yes, my two elder brothers also have been diagnosed with LGMD2A/R1.

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

The greatest challenges involve activities of daily living.  And not being able to serve my parents who are getting older every day.

What is your greatest ACCOMPLISHMENT?

My greatest accomplishment has been setting up an organization for muscular dystrophy – Indian Association of Muscular Dystrophy. www.iamd.in And now establishing a center of rehabilitation for all forms of muscular dystrophy.

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

What ever I am today is just because of LGMD. I ran a successful ladies designer wear boutique for 27 years, side by side set up the organization for muscular dystrophy.

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 bring the same for each and every individual diagnosed in this world.