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Understanding Rett Syndrome

Rett Syndrome-RTT is a rare genetic brain disorder that is found almost always in girls and very rarely in boys.

The disorder can be detected at an early age of 6 to 18 months in infants and is not a degenerative disorder. It causes progressive loss of motor skills, physical movements and communication skills

The cause of Rett syndrome is mutation in a gene called MECP2 which is X chromosome gene.

As per data 1 out of every 10,000 female births is found to be affected by Rett syndrome. The baby would grow normally for few months and then the signs appear.

Rett syndrome is a serious medical condition and can also result in sudden death. The affected children may also have intellectual disability.


Some of the signs of the Rett syndrome are

- Slow, delayed growth

- Loss of coordination, hand movement

- Inability to crawl or walk

- Losing ability to speak, communicate, and make eye contact.

- Hand fidgeting and unusual hand movements

- Increase in irritability, constant crying, mood swings

- Seizures

- Irregular heartbeat.

- Disturbed sleep and digestive problems


There is no cure for Rett syndrome at present and medications are used to ease the symptoms such as seizures. Physiotherapy, body braces, special care is given to patients to help them cope with coordination and communication barriers.

Samir Sethi, President of Indian Rett Syndrome Foundation shared infowith NewzHook.

Rett syndrome can present with a wide range of disability ranging from mild to severe. The course and severity of Rett syndrome is determined by the location, type and severity of mutation and X-inactivation. Therefore, two girls of the same age with the same mutation can appear quite different. Samir Sethi, President of Indian Rett Syndrome Foundation

Indian Rett Syndrome Foundation is a national association of Parents, Families, Doctors, Scientists, Health professionals and care takers of children with Rett syndrome.

There is a lack of awareness about the disorder in India and many times the symptoms can be misdiagnosed as that of autism, cerebral palsy, or non-specific developmental delay.

Parents of girl child in India face extra pressure due to stigma from society. the mindset needs to change. The treatment and care offered to a girl child should not be less than that offered to a male child.

It is of paramount importance that parents accept the condition of the child and provide affection and care.

Latha Venkatesan, Parent and Member of Special Child Assistance Network (SCAN) shared her insight.

"For girl child mother is the only hope for them.so don't show your face or negative attitudes like she is your sin, karma etc. Keep them happy and love them open heartedly/unconditionally that is the only thing we can give them. Positivity of girl parenting is if we take one step towards them means they will come few steps towards us. She taught me how to see the positive side of things. She gave me the strength to face and to overcome all the hurdles in my journey with her. Join with like-minded parent group which gives us strength and confidence"

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