5-28/2015:

Name:  Tarun             Age: 29 yrs. old

COUNTY: India

LGMD Sub-Type: Unknown

 

AT WHAT ARE WERE YOU DIAGNOSED:

I diagnosed at the age 13.

WHAT WERE YOUR FIRST SYMPTOMS:

I first noticed muscle weakness at age 13. As a child, I had a tendency to walk on my toes. I would fall over when trying to run & also struggled standing up from a chair or the ground,

DO YOU HAVE OTHER FAMILY MEMBERS WHO HAVE:

Yes, My elder sister too has LGMD

WHAT DO YOU FIND TO BE THE GREATEST CHALLENGE IN LIVING WITH LGMD:

The greatest challenge is finding the energy to do everything I want to do.  I want to be an independent person and I would  resist taking help as much as I can but I have to rely on family for simple daily things. Sometimes it is like having an itch that I can’t scratch.

WHAT IS YOUR GREATEST ACCOMPLISHMENT:

My greatest accomplishment is living a productive and active lifestyle despite the challenges that I encounter on a daily basis due to my LGMD diagnosis. I stay happy and keep smiling no matter what. I used to go to the office on my 3 wheel scooter, so many times I fell down from my scooter and had stitches on my face.  People around me told don’t stop driving if you fell we are here to pick you.

HOW HAS LGMD INFLUENCED YOU INTO BECOMING THE PERSON YOU ARE TODAY:

LGMD has helped me in a lot of ways; despite causing me to be physically weaker. It taught me how to keep a smile on my lips without caring about ups and downs of life. It showed how great parents could be. How loving, caring and dedicated a mother could be. How sacrificing and loving a father could be. How supportive siblings could be.  It has also taught me a lot about myself.  I have made life-long friendships with so many special people who have disabilities.

WHAT DO YOU WANT THE WORLD TO KNOW ABOUT LGMD:

I want people to know that the disease of LGMD exists. You may not even be able to tell that someone has LGMD. You may see another person and think they just walk differently or slower. Though my country is developing quickly but it lacks  disable friendly zones in public places such as banks, ATMs, post office etc.  Generally people think we are useless and sympathize but I would want this type of attitude to change.  We have disability in our body not in our mind.  Most importantly, I want the world to know that LGMD is not a reason to believe that someone’s life is any less valuable. God can and does use difficult experiences, trials, and suffering.

 IF YOUR LGMD COULD BE “CURED” TOMORROW, WHAT WOULD BE THE FIRST THING THAT YOU WOULD WANT TO DO:

First thing I would probably just drive car till the road ends J and run, sit down and then stand up and then sit down and stand up over and over because I could.