Andhra Pradesh - Vijayawada   

Helping parents tackle children with DMD

VIJAYAWADA: She lost her son to the dreaded disease and now she is on a campaign to help parents having children suffering from ‘Duchenne Muscular Dystrophy' (DMD).

K. Sujatha, founder president of Venkatesh Muscular Dystrophy Foundation, moved to Hyderabad from Vijayawada for the treatment of her son over a decade ago. There were no neuro-physicians in the city then.

The symptoms of the disease appear only in male children before the age of 5. In the beginning, there is progressive muscle weakness with loss of muscle mass in the legs and pelvis. Eventually this weakness spreads to arms, neck and other areas. As the disease progresses, muscle tissue disappears and is replaced by fat and fibrotic tissue. By the age of ten, the child will need braces to walk and most patients are in wheelchairs by the age of 12. The average life expectancy for patients afflicted by DMD varies from late teens to mid 20s.

Venkatesh lived until he was 26, an age that is much longer than other DMD children in India. With the knowledge and experience she gained while tending to her son, Ms. Sujatha is now helping other parents having children suffering from DMD. “The instant a child is diagnosed with muscular dystrophy, the parents give up. Unfortunately, doctors are themselves responsible for the attitude of the parents,” she said, during her visit to the city on Tuesday.

The foundation has been working in Hyderabad and will soon establish an office in Vijayawada as well. “Several parents from interior rural areas have asked me to set up an office in Vijayawada to cater to the needs of coastal districts,” she said.

DMD children were now being treated in NIMS every Monday. Neuro Muscular Disorders specialist A.K. Meena examines DMD children in the outpatient clinic in NIMS every Monday. The foundation has taken it upon itself to popularise this clinic at NIMS, she said.

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