Events like the latest charity football match between Team GBG and Team Health & Protection make a “big, big difference” to Wolfram Syndrome UK, according to the charity’s co-founder and CEO Tracy Lynch.
In the pouring rain Team GBG ran out 3-2 winners in the latest edition of the FJN Cup in Horsham, West Sussex.
But there was a serious point to the football festivities, with local charity Wolfram Syndrome UK once again the beneficiary of the day’s charitable donations, with £824 raised on the day and £295 on a Just Giving page as of this morning, which is still open.
The charity is dedicated to improving the lives of people with Wolfram Syndrome – a progressive neurogenerative life shortening condition affecting many of the body’s systems.
Common features of Wolfram syndrome are high blood sugar levels resulting from a shortage of the hormone insulin (a condition called diabetes mellitus) and progressive vision loss due to degeneration of the nerves that carry information from the eyes to the brain (a condition called optic atrophy).
The condition affects just one in 770,000 of the UK population and Lynch (pictured left), whose own daughter is of one that number, told Health & Protection that such rarity means often doctors have not heard of it.
“When we saw ophthalmic consultants after my daughter was diagnosed, we told him we now know what’s wrong with her and he said he remembered it vaguely as a multiple choice question on an exam paper,” she said.
Lynch added another problem was getting insurance, particularly travel insurance for holidays which often proved a difficult task.
“It is difficult to get cover for the condition. I know families that have found it difficult because there are so many issues.
“There are so many health conditions so you’ve got the diabetes. You’ve got the vision impairment – that can cause problems.
“There are lots of things that bump up the cost of going on holiday. It is a case of having to look around and sometimes having to find insurers that specialise in disabilities, which is still not that cheap but they can sometimes can get slightly better cover.”
Consequently, Lynch added that events like the charity football match make a “big, big difference” to Wolfram Syndrome UK.
“The main thing is raising that awareness because everyone knows about Motoneuron or Cystic Fibrosis or Down’s Syndrome,” Lynch continued.
“Down’s and Cystic Fibrosis are classed as a rare disease. We are an ultra rare disease. There are something like 7,000 rare diseases but we are down right at the bottom because we are so rare.
“We have about 114 people on our UK database but that is still minimal if you think how many people there are in the UK. That’s like nothing.”
