Although it is a fiction story many of the events have happened to real people. There are a lot of emotions that come into play when you have life-changing news and this book provides a glimpse into that world. Rarity deals with what happens when someone you love is diagnosed with a rare disorder. “ Rarity is more than a teenage love story/drama. The median life expectancy for those who have been diagnosed is 51.”Ībove information borrowed from Annabelle’s challenge – a foundation dedicated to Vascular EDS awareness, research and treatment. Latest figures suggest an estimated 700 in the UK are affected by vascular EDS, however less than 100 patients are registered on the NHS EDS Diagnostic Service database. This leads making the connective tissue less effective, particularly in blood vessels, hollow organs and the skin.īecause many individuals with the vascular type of EDS are identified only after a severe complication of death, it is likely vascular EDS does not come to medical attention and therefore go undetected. When this gene is altered it causes a lack or deficiency of this collagen.
This gene is the instruction for making collagen type III. “ Vascular Ehlers-Danlos Syndromeis a genetic condition caused by an alteration, also known as a mutation, in a gene called CO元A1. Roach’s story is also featured in Our Stories of Strength – Living with Ehlers-Danlos Syndrome Chasing a cure for Vascular Ehlers-Danlos Syndrome – Interview with D.A.
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