Turner Syndrome is a rare condition that affects development in females, where they are born with one X chromosome missing, which affects the growth of children. Children require long term care, including for puberty and fertility. One in 2,500 female live births reportedly have Turner Syndrome, and yet, there is no support group in India.
According to the MAGIC Foundation - India, approximately 98% of pregnancies with Turner’s Syndrome abort spontaneously and approximately 10% of foetuses from pregnancies that have spontaneously aborted, have Turner’s Syndrome.
The MAGIC Foundation - India is an offshoot of the US organisation, and has a parent and patient support group for children with growth disorders. On Sunday, the foundation is organising a conference in Bengaluru for patients with Turner Syndrome, caregivers as well as doctors.
The conference will have Dr Shailendra Singh and Isani Singh, who are involved with Turner Syndrome support and research; Dr Raghupathy, a paediatric endocrinologist; Dr Shaila Bhattacharyya and Dr Santosh Olety who are both endocrinologists; and Dr Reeta Billiangady, who will speak on the fertility aspects of Turner Syndrome.
The speakers will cover areas from diagnosis to genetics to long-term care. In addition, there will also be a panel discussion where patients and caregivers can engage.
Patients with Turner Syndrome have a missing X chromosome, so they have only 45 chromosomes as opposed to 46 — leading to effects such as short stature, cardiovascular challenges, fertility challenges and learning disabilities.
“These girls have to be on oestrogen and progesterone all their life even to induce puberty and fertility definitely requires some sort of support. They also require growth hormone treatment which is often expensive and out of reach,” says Deepa Kannan, one of the founders of MAGIC Foundation - India.
She adds that there is often social taboo attached to these disorders, which is why the conference is free for anyone who wishes to attend.
“When it’s diagnosed, monitored and managed well, patients with Turner Syndrome can have a truly normal life,” she adds.
The conference will be held at the Grand Magrath Hotel in Bengaluru at 9 am on January 12. To register, one can email email@example.com.