Running 10 miles for Harlequin Ichthyosis

Nicola Crowley is raising money for Barts Charity

Participants: Nikki Crowley, Pip Rata, Zoe Morgan, Giles Crowley, David Gardner

Story

In October this year Pip, Nikki, Giles, Zoe and David will be running 10 miles in the Great South Run to raise money for vital research into Harlequin Ichthyosis at Barts and the London Hospitals.

Harlequin Ichthyosis is the most severe and frequently lethal form of recessive congenital ichthyosis. The skin of babies born with this inherited condition forms thick hard diamond shaped plaques with deep fissures due to its inflexibility, which increases their susceptibility to infection. It may also cause the eyes, ears, mouth and other appendages to contract abnormally. This makes it difficult for them to feed. It is a rare condition that requires intensive care treatment. The survival rate of children born with this disease has improved over the years, but many will die within days of birth. Treatment will be required for their entire life.

Research led by Professor David Kelsell of Barts and the London School of Medicine & Dentistry aims to develop treatment options; promote international research collaborations to strengthen investigations into this rare condition; make prenatal screening tests available; and disseminate clinical best practice.
For more information, please visit: http://www.bartsandthelondoncharity.org.uk/ourprojects/children's_hospital/-/page/124/

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