By Rosa Smith
A TEENAGER from Dursley who is the only person in the county to suffer from a rare genetic disorder known as Wolfram Syndrome is to raise funds and awareness by running a stall in a supermarket.
Georgina Carolan, 19, was diagnosed with Wolfram Syndrome in 2013 after having type one diabetes for two years. She was later diagnosed with optic atrophy and diabetes insipidus.
The former Katharine Lady Berkeley’s School student will sell wristbands from Sainsbury’s in Dursley later this month – raising vital funds for Wolfram Syndrome UK.
“The charity helps to bring people affected by WS together so that we don’t feel so isolated as it’s such a rare condition,” Georgina told the Gazette.
“It’s reassuring to know that right now a group of scientists are helping to find a treatment,”
The rarity of WS means that most doctors have never treated a patient suffering from it before and Georgina is the only person known to have the condition in Gloucestershire.
WS is an autosomal-recessive genetic disorder which affects around one in 770,000 adults in the UK. The main symptoms are diabetes insipidus, type one diabetes (mellitus), optic atrophy and deafness, as well as other possible disorders.
At the moment there is no cure for the syndrome. Current treatment includes managing the symptomatic conditions, such as type one diabetes, and other health complications caused by the disorder.
Wolfram Syndrome UK is a charity founded in 2010 by a family who have a daughter with the condition. It is the only support group and website in the UK specifically for people who suffer from the disorder.
All funds that the charity raise are put towards research into potential treatments (primarily slowing down the progression of the illness) as well as supporting those affected and their families, raising awareness and funding their annual conference.
Georgina, who is a part time employee at the Sainsbury’s in Castle Street, Dursley, will be running a stall in the store between 8am and 1pm on Saturday, August 13, selling wrist bands and raising money for WS sufferers.
Georgina completed her A-Levels this summer and will be attending a Wolfram Syndrome conference in October.
For more information visit www.wolframsyndrome.co.uk
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here