Indian Rett Syndrome Foundation is raising awareness about this rare disease
March 12, 2019
Rett Syndrome is a very rare genetic disorder that affects the physical movements. Mental growth and communication skills.
The syndrome is found in girls and very rarely in boys. Like most rare diseases, the awareness level about Rett Syndrome is extremely low in India.
Social stigma, misinformation and lack of support are some major obstacles faced by families with children who have the syndrome
Adding to this is the fact that the disorder is linked to girls, the disorder is not talked about much in the country. The Indian Rett Syndrome Foundation (IRSF) is aiming to change that and is working with different stakeholders in this regard.
Parents, family members, doctors, scientists, medical and health professionals, caretakers of children with Rett syndrome, all are bought together through the foundation.
Being a rare disease with an incidence of around 1 in 10,000, parents have to struggle for care and management of the co-morbidities with doctors of various specializations. Occupational and physiotherapy is essential for such children, making the medical treatment and rehabilitation very complex and expensive. No medical insurance cover is available being a genetic disorder. Awareness and education is the key to improve proper diagnosis while a parent support group is essential to take care of the social and psychological needs of such families collectively. - Samir Sethi, President,Indian Rett Syndrome Foundation
The IRSF was set up in 2007 in Delhi and since then the organisation has provided much needed support platform to parents and individuals with Rett Syndrome. It does this by:
- Raising awareness about Rett syndrome in India and identifying patients.
- Helping families by educating them about the syndrome and providing useful information.
- Making caregivers understand about the type of care needed for patients of Rett syndrome.
- The organization is aiming to provide better life to the children and adults affected by Rett syndrome. This is done by getting proper information from doctors, experts and spreading the information to families of affected people.
- Since it is paramount that awareness be created in the society about Rett syndrome, IRSF holds events to bring the various stakeholders together.
Girish Wadhwani, a parent, says the IRSF has been crucial in providing him support. "Through IRSF, parents like me are trying to spread awareness and provide support and guidance to each other. Our society suffers from stigma and taboos when it comes to taking care of the girl child. IRSF is changing the outlook by encouraging and motivating parents. Our daughters deserve love and care and as parents that is our foremost responsibility."
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