Hutchinson-Gilford Progeria Syndrome: What is it and how does it affect those with the disorder?

Hayley Okines died four years after her 13-year life expectancy

Lamiat Sabin
Friday 03 April 2015 19:10 BST
Hayley Okines, who had progeria and died aged 17 from pneumonia, was expected to only live until the age of 13
Hayley Okines, who had progeria and died aged 17 from pneumonia, was expected to only live until the age of 13 (PA)

A British girl with progeria – who is also known as the “100-year-old” teenager – has died aged 17.

Hayley Okines, from Bexhill-on-Sea in East Sussex, died last night after years of campaigning to raise awareness of the incredibly rare disease that rapidly aged her body to that of a centenarian at the beginning of her teenage years.

Her mother Kerry announced her death to the world last night via Facebook. She wrote: “My baby has gone somewhere better. She took her last breath in my arms at 9.39pm.”

Hayley sought to lead a full life, despite having been given a life expectancy of 13 years. She made numerous media appearances, wrote an autobiography and travelled to the US for pioneering drug treatment that gave her a new lease of life.

Her condition deteriorated after she contracted pneumonia, four years after she was expected to lose her life.

What is progeria?

Hutchinson-Gilford progeria syndrome is a rare genetic disorder that people are born with that makes them age eight times faster than normal.

It is currently deemed as incurable.

What are the symptoms of the disease?

Those with the condition die of heart disease in their early teenage years, when it would usually affect adults in their mid to old age.

Other symptoms include loss of hair, lack of growth and loss of body fat. Mutant protein progerin causes the accelerated ageing.

How many people have progeria?

There are not more than 100 children in 43 countries that live with progeria, according to the Progeria Research Foundation.

Now, there are three known cases of children with the disease in the UK.

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