The campaign aims to locate and assist children with this rare and fatal rapid aging condition
The Progeria Research Foundation on Monday launched a campaign to search for children with progeria, a rare and fatal rapid aging condition, in Bangladesh.
The campaign named "Find the Children - 10 in Bangladesh with Progeria" aims to create awareness among the general public and healthcare providers, in order to locate and assist children with this rare and fatal rapid aging condition.
The Progeria Research Foundation is the only organization in the world dedicated to discovering treatments and the cure for children with Progeria.
Progeria, also known as Hutchinson-Gilford Progeria Syndrome (HGPS) is a rare, fatal genetic condition characterized by the appearance of accelerated ageing in children.
Children with Progeria die of heart disease at an average age of 14 years — the same heart disease that affects millions of normal aging adults.
Other symptoms of Progeria include stiffness of joints and hip dislocation, growth failure, loss of body fat and hair, and aged-looking skin that gives children with Progeria a unique and similar appearance, despite differences in ethnic backgrounds.
Audrey Gordon, president and executive director of Progeria Research Foundation said, "Bangladesh is a country with nearly 165 million people. Statistically, this means we expect approximately ten children with Progeria are living there. We can connect the children with other families, provide treatment recommendations, give them an opportunity to join clinical treatment trials, and give them access to a drug that may improve their cardiovascular status and extend their lives."
According to experts' estimation, there are approximately 350-400 children living with Progeria worldwide, but only 161 children are identified by The Progeria Research Foundation as of October, 2019. Thus, approximately 200 children remain undiagnosed. Over the past years, 3 children have been identified in Bangladesh.
"Families with Progeria in Bangladesh will be part of the PRF International Progeria Registry once they are found out. They can receive treatment recommendations and join clinical treatment trials then. Our goal is to provide these opportunities to every child with Progeria in Bangladesh," said Dr Leslie B Gordon, medical director of Progeria Research Foundation.
According to an April 2018 study published by Dr Leslie Gordon in The Journal of the American Medical Association (JAMA), children with Progeria who received lonafarnib showed an extension of lifespan. This was the first evidence of any treatment benefiting survival for this fatal disease.