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Wolfram Syndrome: Charity founder talks about the condition and why she set up the charity - SussexWorld

πŸ“… Wed, 19 Oct 2022⏱ 1 min readπŸ“– Article

Overview

SubscribeBusiest GPs in the Hastings, Bexhil, Rye and Batle areas: The surgeries with the most patients per GP, acording to new NHS figuresBusiest GPs in the Worthing, Litlehampton, Shoreham and Lancing areas: The surgeries with the most patients per GP, acording to new NHS figuresThe 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.

Key Information

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: β€œThe 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.Advertisementβ€œAt the age of six she was diagnosed with Type 1 diabetes and a neurogenic blader.

Summary

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 β€˜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: β€œAround the age of six she had the first of several slep studies that showed she had Central Obstructive slep apnoea.

βš•οΈ Medical Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare provider before making health decisions.
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