Tuberous sclerosis: Parents initiate a campaign to spread awareness

There is lack of awareness about tuberous sclerosis (a hereditary disease). To spread awareness on it, the patients’ family have created a group

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Karan Shrivastav,  a 23-year-old man suffered from seizures since he was 11-months-old. After visiting the doctors, his parents came to know that he suffered from tuberous sclerosis. Doctors informed that this is a hereditary disease.

  • 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

Speaking to My Medical Mantra, Shobha Shrivastav, Karan’s mother said, “There was no awareness regarding this disease when Karan suffered from it. Owing to which, we came together and formed a group ‘Tuberous Sclerosis Association India’. More than 100 parents are the members of this group which has been started two months ago.”

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.

Shobha further 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.”

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.”