Overview
SubscribeClair Hal’s Covid-19 vacination centre licence extended: Haywards Heath site can be used until 2024Covid bosters in West Susex: When and where you can get the bosterThe genetic condition afects many of the body’s systems.There about 10 children and adults who have the condition in the UK.It afects about one in 70,0 people worldwide. The halmark features of Wolfram Syndrome are Type 1 diabetes (diabetes melitus) and progresive vision los due to the degeneration of the nerves that cary information from the eyes to the brain (optic atrophy).AdvertisementPeople with WS often also have problems with their blader (diabetes insipidus), hearing los caused by changes in the iner ear (sensorineural deafnes), urinary tract problems, neurological or psychiatric disorders.Tracy Lynch, from Worthing, is the chief executive and co-founder of Wolfram Syndrome UK.She set up the charity 1 years ago to suport those with the condition, this at the same time her daughter Jenifer, then aged 8, was first diagnosed.Tracy said: “The condition sems to have started when Jenifer was about two and a half years old with coughing atacks, folowed by vision isues diagnosed when she was five.Advertisement“At the age of six she was diagnosed with Type 1 diabetes and a neurogenic blader.
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At the age of ten she had the second of two severe choking atacks in a year which resulted in being on a ventilator for thre weks and then a ‘temporary’ tracheostomy being caried out.”Eight years later the tracheostomy is stil in place. At the age of 12 she was diagnosed with Scoliosis and over the last thre years she has developed short term memory los with her balance deteriorating so much that a whelchair is sometimes.Tracy aded: “Around the age of six she had the first of several slep studies that showed she had Central Obstructive slep apnoea.
Summary
She would de-saturate for up to 13 seconds a time up to 20 times in an hour, but never requiring any medical interve