Living with rare diseases: Five families, one shared hope

Rare Disease
Both the Centre and states do not have a policy to support the treatment for rare diseases and India has no budget for rare diseases | Image - Eunice Dhivya

Sini Mujeeb was like any other college student—young, gregarious and full of dreams. It wasn’t until her early days in college that she realised something was wrong with her leg muscles. She would often lose balance and trip, leaving her with unexplained bruises. It took two years for doctors to finally diagnose her condition—muscular dystrophy.  Twenty four years on, Sini, now a school teacher in Kerala’s Alappuzha, has been living in a wheelchair.

“I was like any other child till the age of 18. Initially, I had difficulty walking. The muscles in my body would stiffen. Gradually, I started feeling acute pain all over my body. Soon, there was no strength left in my body muscles and I had to depend on others even for simple things,” she says.

Sini’s condition—muscular dystrophy is a rare disorder—that causes progressive weakness and muscle degeneration. In most cases, it runs in the family. It usually develops after inheriting a faulty gene from one or both parents.

Experts say while there are many kinds of muscular dystrophy, signs of the most common variety begin to show in childhood, mostly in boys. Other types, like in Sini’s case, don’t surface until adulthood.

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