INDIVIDUAL WITH LGMD: Boonsub

Name:  Boonsub

Age:  31

Country:  THAILAND

LGMD Sub-Type:  LGMD 2A/R1 calpain3-related

At what age were you diagnosed?

I was diagnosed at the age of 20.

What were your first symptoms?

Rhabdomyolysis (Muscle pain and dark urine) due to heavy exercise.

Do you have other family members who have LGMD?

No, I do not have any family members with LGMD.

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

Since I was diagnosed, running and climbing the stairs have been challenging. Thus, I have no opportunity to participate with others to do adventurous activities.

What is your greatest accomplishment?

At present, my greatest accomplishment is educationI am a medical doctor and also faculty in medical school. I also graduate Master of Public Health program at Harvard T.H. Chan School of Public Health. In addition, I am studying in the Ph.D. program (Epidemiology) at the University of Minnesota.

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

I realize that I have to live with LGMD. I think nothing is worst than this. Although LGMD affects my muscles, my brain is still well. Regarding my ability, I am willing to help others, especially my colleagues, medical students, and friends. LGMD teach me that Life is too short to waste it. I don’t know how long I can live in the world. Therefore, I do everything in my best.

What do you want the world to know about LGMD?

LGMD is a genetic disease involving the muscles and minds of people living with it. However, every person has potential; thus, they can use it to create a wonderful world.

I thank my institute, teachers, friends, and mother for supporting me over time in every dimension.

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

I will run!