Mumbai parents come together to form support group for rare disease
Over 100 parents of children with tuberous sclerosis have come together in Mumbai to form an association and support group. This is to create awareness about this rare condition that affects one in 6,000 children.
Tuberous sclerosis is a leading cause for epilepsy and autism in children. Kids with this condition also have a white patch on the hand, leg or chest.
Experts say that children with tuberous sclerosis have tiny tumours on their hearts, brains, skin, kidneys or lungs. As the tumours grow, it may lead to diseases and need operation and lifelong treatment.
The idea of starting such a support group came from a parent in Pune, Rohit Nath, whose son was diagnosed with tuberous sclerosis when he was two weeks old. He had never heard of the condition and looked for support from other parents. Nath started a WhatsApp support group two years back to help parents cope with the diagnosis and stressful treatment.
By setting up the Tuberous Sclerosis Association of India, these parents want to empower and connect caregivers and patients so they can manage the condition better.