Nager syndrome: how to recognise and support children with this rare, genetic condition

New Delhi: Nager syndrome is a rare genetic disorder that causes severe development problems, both externally and internally. Apart from affecting the face, hands, and arms, several areas of the face including a cleft lip, the syndrome also affect the development of the liver, genital organs, and kidneys.

Infants born with this syndrome have massive feeding problems because of underdevelopment.

Most of the Nager cases are due to mutation in genes. The SF3B4 gene faces a lack of protein that is responsible for the growth of body cells. Research across the world has opined that the mutations in the gene impair the processing of the DNA leading to the abnormal development of bones and other body structures.

Nager is a lifelong condition with no cure. Even though it does not affect the development of the brain and children with the syndrome can function properly, they cannot compete with normal children physically and would need help all the way.

Early detection is the only possible treatment that you can provide your child. In addition to surgeries to alter any deformity in organs or physical features, Nager syndrome can be managed with various therapies to help your child reach their full potential:

Speech therapy: Since Nager affects the development of organs, your child may not be able to speak or hear properly, and hence speech therapy can work well to address vocal and other developmental delays.

Psychotherapy: Because of the syndrome, the child may feel secluded and distant from his peers and may develop some mental health issues. They must seek a mental health therapist who can help them gain confidence despite their disability.

Physical therapy: It can help strengthen their bones and muscles, making them more mobile and probably independent.

Genetic counseling: Genetic counseling is required to give support to the child throughout their life journey.

Disclaimer: Tips and suggestions mentioned in the article are for general information purposes only and should not be construed as professional medical advice. Always consult your doctor or a dietician before starting any fitness programme or making any changes to your diet.