BENGALURU: Girls affected by Rett syndrome — a neurodegenerative disorder that mostly affects girls because of gene mutation in the ‘X’ chromosome — have to visit multiple hospitals for speech therapy, occupational therapy and physiotherapy.
With not many occupational therapists, parents run from one hospital to another every week for sessions. Rett Syndrome patients have problems with language, walking, motor coordination and have seizures, may have deformities, and sleeping problems too.
At an awareness meet held at National Institute of Mental Health and Neurosciences (NIMHANS) on Sunday — which was attended by families of girls suffering from Rett Syndrome, from all across the country — mothers poured out their difficulties in looking after their daughters with no government-sponsored insurance schemes like Arogya Karnataka or the Centre’s Ayushman Bharat covering it.
Lack of special schools for their daughters and difficulty in getting disability certificates was also a concern. Menaka Prashanth, a resident of RT Nagar has her four-year-old daughter Kenisha Prashanth undergo occupational therapy (to enable her to do her daily activities) and speech therapy for 45 minutes at least once a week. But, she could have initiated this earlier had Kenisha been diagnosed correctly the first time itself.
“When Kenisha was two-and-a-half-years-old, she was misdiagnosed as autistic, but she could maintain eye contact, which is difficult in autistic children. Later, after a genetic testing, it was found that she had Rett Syndrome,” Menaka said.
“Each session costs Rs 500-Rs 800. It would be helpful if the government fixes nominal fees for these sessions. Insurance companies do not cover genetic disorders,” she added. Dr Sumita Danda, Director, Genetic Clinic, Christian Medical College, Vellore, who was also present, said genetic testing is a must for
accurate diagnosis.