#RareDiseases - Indian Rett Syndrome Foundation is raising awareness about this genetic brain disorder
In our July campaign on rare diseases, we look at Rett Syndrome, a genetic disorder that affects physical movements, mental growth, and communication skills. The syndrome is found mostly in girls and awareness levels are rather low in India
Stigma, misinformation and poor support are just some of the major barriers that families caring for children with Rett Syndrome come up against. Compounding this is the fact that the disorder is mostly linked to girls, who face the burden of stigma much more.
The Indian Rett Syndrome Foundation (IRSF) is aiming to change this by working with different stakeholders including family members, doctors, scientists, medical and health professionals, and caretakers of children with Rett Syndrome.
With an incidence of around one in 10,000, accessing the right mecical supprt at the right time is a major challenge.
Parents also have to struggle for care and management of the co-morbidities with doctors of various specialisations. Occupational therapy and physiotherapy is essential for such children, making treatment and rehabilitation complex and expensive. No medical insurance cover is available as it is 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
Launched in 2007 in New Delhi, the IRSF offers support by:
- Raising awareness and identifying patients.
- Educating families about the syndrome.
- Making caregivers understand the type of care needed.
- Accessing proper information from doctors, experts and spreading this information to families.
- Organising events that bring various stakeholders together.
For Girish Wadhwani, who has a child with the syndrome, the IRSF has been crucial. "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."