Breaking News Emails

Get breaking news alerts and special reports. The news and stories that matter, delivered weekday mornings.
 / Updated  / Source: NBC News

A campaigner who raised awareness of the rare genetic condition progeria, which causes those affected to age about eight times faster than average, has died at age 17.

The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday at her home.

The group's executive director Audrey Gordon praised Okines for her participation in drug trials and research that helped make progress toward treatment for the condition. Also known as Hutchinson-Gilford Progeria Syndrome (HGPS), symptoms such as growth failure, loss of body fat and hair, aged-looking skin and stiffness of joints show up during the first year of life.

"Today we remember her tremendous courage and determination," the group posted on its website.

Hundreds of tributes were swiftly posted across social media, celebrating Okines' life.

Okines published her autobiography, "Old Before My Time," at 14, detailing her unusual life. In her book "Young at Heart," she wrote: "My life with progeria is full of happiness and good memories."

The Progeria Research Foundation says the condition affects about 1 in 4 million to 8 million newborns. Those affected die at an average age of 14.

In this photo provided by the Progeria Research Foundation on Friday, April 3, 2015, Hayley Okines, right, talks during an interview with her mother Kerry. A campaigner who raised awareness of the rare genetic condition progeria, which causes those affected to age some eight times faster than average, has died at age 17. The U.S.-based Progeria Research Foundation said Hayley Okines, from East Sussex in England, died Thursday, April 2, 2015, at her home. It did not provide more details.Progeria Research Foundation via AP

IN-DEPTH

— The Associated Press