Today i am discussing the story of Leslie Gordon and her husband Scott Berns, whose baby was unable to gain weight as he should have, had cut no teeth and was losing his hair. The couple were in for a shock when they learnt that their infant son was suffering from Progeria.
Progeria was first described in 1886 by the British doctor Jonathan Hutchinson and then in 1897 by his countryman Hastings Gilford.
Children with progeria develop normally for the first year, but then their growth begins to slow. Their bones weaken, their joints stiffen and they may get dislocated hips. Their skin becomes less elastic and creases into wrinkles. They often lose their hair.
Children with progeria tend to die from a heart attack or stroke. The walls of their blood vessels thicken and stiffen and can accumulate cholesterol-laden plaques and calcium which is a direct cause of high blood pressure and heart disease.
Gordon and Berns dropped everything and started trying to know more about this disease (this was way back in 1998). They came across some important facts about Progeria:
- There was no cure and no treatment for Progeria.
- The average age at which children with progeria died was 13.
- There was almost no ongoing research to study this condition and almost no funding or a resource for families.
- Only 80 children in the world are known to have progeria.
Gordon set up the Progeria Research Foundation with the goals of finding a cure for Progeria and providing support for affected families. The main goal of Gordon’s team and other researchers in this field is not only to understand progeria to help a few children and their families, but also to unlock the secrets of aging process we all experience.
Progeria worsens with normal aging. Aging of blood vessels may lead to two of the major causes of death, heart disease and stroke. “We have not had a brand-new avenue for studying aging and cardiovascular disease in some time,” Gordon says. “Progeria gives that.” In fact the popular hollywood movie, the “Curious Case of Benjamin button” and a Bollywood movie, Paa, have depicted people suffering from this condition.
Listed below are some clinical trials investigating new treatments for progeria.
- Bollywood Movie 'PAA' Puts Spotlight on Very Rare Disease Progeria
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- Gordon Lightfoot and other famous people with Bell’s Palsy
- Promoting cystic fibrosis clinical trials with Celine Dion, Gordon Brown and Boomer Esiason
- A case of 10 infants, Pertussis (Whooping Cough) and Jeff Gordon