The sister of a much-loved man who died from a rare disease has said more people need to be made aware so lives can be saved.
Susan French, the owner of French Complexion beauty salon in Hadleigh, is campaigning to raise funds for Vasculitis UK a charity dedicated to funding research into the rare disease which causes inflammation of the blood vessels.
Miss French’s brother Paul French, died aged 69 in September after initially being treated for arthritis in the muscles.
“He started to get better and then it came back but this time the steroids did nothing,” said Miss French.
“He went to hospital and they said he had vasculitis. We’d never heard anything about it. We had to look it up.”
The disease affects about 2,000 to 3,000 people a year and is often mistaken for other conditions including cancer, with many of the symptoms very similar.
“The charity has told us the steroids might have actually masked the problem,” Miss French said.
“A GP will only come across this once or twice in their career. It’s not the GP’s fault, they just won’t recognise it.
“It was just so devastating. He was so fit. He was never ill. It can affect anyone.”
Its rarity means there is little in the way of exposure to assist in fundraising for research compared to other diseases such as cancer.
Miss French said: “The charity is run in a kitchen. Everybody’s had family members or friends suffer from it. They are trying to let people know about vasculitis.”
To support the charity, which is run by volunteers, Miss French is organising a black tie racing night and auction in the beautiful surroundings of Hintlesham Golf Club.
“I want to do all I can to help them,” she said. “We are going to make it a happy and a good night.”
The charity auction already includes a signed Kevin Keegan England shirt.
It is hoped the black tie event will raise thousands of pounds for the charity to fund research into the disease, which is treatable, particularly with early diagnosis.
Miss French from Whitlands, Glemsford, who is organising the event, said she hoped increased awareness of the condition raised from the event would lead to earlier diagnoses.
Vasculitis is a condition that involves inflammation in the blood vessels and occurs if the immune system attacks the blood vessels by mistake. This can happen as the result of an infection, medicine, or another disease or condition.
There are a number of symptoms for the different types of the disease, with some confused for cancer, in particular lung cancer, while many of the symptoms are flu-like.
Described as a fit and healthy man, his diagnosis and death came as a shock to family and friends of the retired decorator who lived in Rivenhall in Essex.
A fan of horse racing, the charity night will see a number of races taking place, the first in memory of Paul.
People are able to sponsor a race or buy a horse, with the chance to take half of the race profits. On the night ‘punters’ can also bet on the winner from a professional tote.
Already people have donated hundreds of pounds to Miss French’s campaign.
“We all know about cancer and the charities that do such an amazing job but this is so different and unknown and that’s why I think people are being so generous,” she said.
The event takes place on Friday, June 12.
Tickets cost £40 and include welcome drinks, wine, hog roast, magic shows and live music.
As well as the Kevin Keegan shirt the auction has some spectacular lots on offer including a signed Manchester United football and Tiger Moth flight experience days.
There is a also a raffle with prizes including golf equipment, champagne and designer handbags.
“I just want everybody to have a good time,” said Miss French.
For tickets and information call 01473 828805.