Twitter
Advertisement

Mumbai boy avails the only known treatment for progeria in Boston

Hutchinson Gilford Progeria, is a rare, fatal genetic condition that accelerates aging.

Latest News
article-main
Nihal Bitla is one of the 60 suspected progeria patients in the country
FacebookTwitterWhatsappLinkedin

Nihal Bitla has recently returned from Boston after undergoing a treatment that might prolong his life. The 14-year-old Bhivandi resident suffers from Hutchinson Gilford Progeria, a rare, fatal genetic condition that accelerates aging. And Nihal may not be the only one. According to the Boston-based Progeria Research Foundation (PRF), there must be at least 60 more children in India suffering from the condition. The foundation now aims to reach out to all of them and provide them with diagnosis, medical recommendations, and research-based treatment.

PRF is funding participation of children from around the world, who can come to Children's Hospital in Boston, US, to have access to the only known treatment for progeria as of now. A team of doctors, including Dr Leslie Gordon, co-founder and medical director at PRF, first identified the drug – lonafarnib – that could improve the cardiovascular health and life span of these children.

Meanwhile, Bitla's parents said that before he left for Boston, his health was deteriorating fast. He was consistently weak and tired, and his heart and lungs couldn't take any exertion. He has, however, responded well to the treatment.

Dr Parag Tamhankar, divisional head at Parel-based Genetic Research Centre, National Institute for Research in Reproductive Health, said, "We referred Nihal to Boston as currently there is no proper treatment available in India. Most children with progeria die of heart problems or strokes. The average life expectancy is about 14 years. The symptoms include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalised atherosclerosis and cardiovascular problems. The children have a remarkably similar appearance, despite different ethnic backgrounds."

He added, "Children with progeria generally appear normal at birth. During the first year, symptoms such as hair loss begin to appear. The disease can be confirmed by a DNA test available at the Genetic Research Centre. There is no cure, but with the new drug treatment, the life of these children can be extended and its quality would also improve."

Audrey Gordon, president and executive director of PRF, said, "Our search for more children with progeria continues. There are an estimated 300-350 children with progeria worldwide at any given time, but right now we know of only 125. That is why we have called our campaign 'Find the Other 150'. Statistically, about one third of the these children live in India, undiagnosed and untreated. We at PRF are here to help. So far, three children have been identified from India. We need to find as many children as possible so that they have the opportunity to benefit from our efforts."

How you can assist

Media, physicians and families around the globe can follow PRF updates on Facebook and Twitter, and can encourage others to use these social media outlets as resources for information.

Images of children with progeria can be seen in PRF's gallery. If someone knows of a child with progeria-like characteristics, please ask the family to contact the Progeria Research Foundation at info@progeriaresearch.org, and visit www.findtheother150.org for MORE resources.

Find your daily dose of news & explainers in your WhatsApp. Stay updated, Stay informed-  Follow DNA on WhatsApp.
Advertisement

Live tv

Advertisement
Advertisement