Category: Ehlers-Danlos in the News

EDS Groups Plan Awareness Events Across the World

From Arizona to Amsterdam, Ehlers-Danlos organizations and individuals from across the globe have planned public events from bake sales and photo shoots, to parade floats and awareness walks for Ehlers-Danlos Awareness Month this May. Local groups and individuals play an integral part in raising awareness for the Ehlers-Danlos syndromes by taking the message to their
View page


First ever disabled Corrie star to take on Great Manchester Run

by Rebecca Day, originally posted by Manchester Evening News on 16 April 2018 Cherylee Houston will join a team of wheelchair users to raise money for TripleC A Coronation Street star will join a team of wheelchair users at the start-line of the Great Manchester Run in May. Cherylee Houston, who plays Izzy Armstrong in
View page


Ehlers-Danlos Syndrome – Diagnosis makes a difference

by Carrie Johnson, originally published by the Arthritis and Osteoporosis Western Australia in the Autumn 2018 issue of Arthritis Today magazine Some of us are naturally more flexible than others, or hypermobile as the medical people describe it. For many, being hypermobile is not a big deal and may even offer advantages in certain sports and careers.
View page


Staying Strong – Using Your Voice

By Naomi Kirtner, originally posted at taliasvoice.org  This week is National Patient Safety Week, March 11 – 18. Although we lost our daughter, Talia —an EDS zebra—due to reckless and negligent care, I find it difficult to feel cheerful about this kind of national awareness program. On the one hand, perhaps it does work as
View page


No More Monkey Bars: A 13-Year-Old’s EDS Story

Written by 13-year-old Isabella ‘Kitty’ Yim. Originally featured on folks.pillpack.com on January 30, 2018 Finding out something about yourself that you did not know before is terrifying. Especially if it is a disease. One that you can not get rid of and have to live with for the rest of your life. The hardest thing
View page


Life in Pain: Luke Murphy profiled in new video from Fixers

Originally posted by Fixers.org.uk on January 23, 2018 A young North Lanarkshire man is speaking out about a rare genetic condition that causes him significant pain on a daily basis. Luke Murphy, 22, was diagnosed with a connective tissue disorder called Ehlers-Danlos Syndrome (EDS) in February 2016. With Fixers, he has made a film to
View page


Family loses third child to Vascular Ehlers-Danlos

Originally posted by BBC News on January 14, 2018 A couple have said they are “heartbroken” after losing a third child to vascular Ehlers-Danlos. Carrick Prentice-Underwood, 19, from Redditch, died on Thursday, 11 of January. It follows the death of his sister Charlotte, 16, in 2010 and 17-year-old brother Craig in 2013. Parents Robert and
View page