Tuberous sclerosis: Parents initiate a campaign to spread awareness

Today, May 15 is observed as National Tuberous Sclerosis Day. There is lack of awareness about tuberous sclerosis (a hereditary disease). To spread awareness on it, the patients’ family whose children are affected with this disease have created a group

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What is tuberous sclerosis (TS)?

  • Tuberous sclerosis (TS) is a rare genetic condition that causes noncancerous, or benign, tumours to grow in your brain, other vital organs, and skin.
  • TS can be inherited. Some people only have mild symptoms, while others experience:
  • Autism
  • Seizures
  • Tumours

There’s no known cure for TS, but most people can expect to have a normal lifespan. Treatments are targeted at individual symptoms, and careful monitoring by your doctor is advised

Owing to which, we parents whose children are affected by the disease came together and formed a group ‘Tuberous Sclerosis Association India’ to raise awareness about the disease in society.

A group member said, “We inform the parents about this disease and treatment.  There is a clinic in the USA. I wish that there should be a clinic in India as well. Owing to which, the children suffering from this disease can get ban appropriate treatment.”

Rohit Nath, a group member from Pune, said, “My five-year-old child is affected with this disease, even I am am member of this group. Through this group we want to raise awareness, that is why, we conduct meets where other parents whose children are going through the illness can come and clear their doubts. we are currently carrying out registrations to include new group members, after registration the new member will be given a TS awareness kit. It will contain detailed information about the disease and its symptoms through pamphlets. It will help raise awareness about this condition.”

Dr Pradnya Gadgil, Paediatric Neurologist, Kokilaben Dhirubhai Ambani Hospital said, “People are not aware about this disease. In abroad, the percentage of this disease is 1 in 6,000. When the baby is born, immediately this disease can be detected. If there is a tumour in the baby’s heart. Then, the disease can be detected in the mother’s womb itself. Due to which, patients can even suffer from epilepsy and autism.”

As per the group members, there is not much awareness regarding this disease. Owing to which, the parents panic if their kids suffer from the same. They fail to understand as to what is to be done. The group has been created to help the parents of the kids suffering from tuberous sclerosis.

Rahul Vipparthi, one of the group members said, “My daughter was four, when she was diagnosed with the disease. Even we were not aware about this disease.  Now, we are working to create awareness about it amongst all the parents.”