Bid to raise awareness of rare blood disease in 1066 country
A family is looking to raise awareness about a rare blood disease and set up a support group in 1066 country after moving back to the area from London.
Antony and Sally Hart’s 22-year-old son Giles has suffered with vasculitis for since he was 17 and regularly campaigned and raised money for Vasculitis UK.
But since moving back to Edward Road, St Leonards, little fundraising has been done and they have discovered there is no support group available for the very few people who have the disease.
May is Vasculitis Awareness Month and Antony said the main reason they want to do something about it is for other people so they can get the same support and advice Giles received.
“It’s more for other people around here who haven’t got the support because if you get a rash, you can go on the support group Facebook page and show others and get advice,” Antony said.
Vasculitis is a very complicated disease. It is difficult to diagnose, treat and understand as many GPs see less than five cases in their careers.
There are many different types, some of which are fatal, but sufferers have to take many tablets to combat it including steroids.
This can affect their immune systems meaning people with the illness are more susceptible to colds and fatigue.
Giles said the worst thing about the illness is being tired all the time and not being able to do anything about it, but his father said he nearly died two or three times in hospital when he was diagnosed.
It started for Giles with a blocked nose and sinuses before his oxygen levels dropped to around 20 per cent and was rushed to hospital. A consultant failed to diagnose it as vasculitis but a junior doctor took a guess and got it right after a series of tests.
A support group for young people with vasculitis was set up as it is more common with middle-aged people so their priorities were quite different to Giles and others in their 20s.
Antony said all the younger adults with the illness wanted to know was whether they could get a tattoo, get drunk or have sex, which the older sufferers did not really appreciate or have advice.
Sally added that Giles has made new friends and has been able to discuss his personal issues, while the 22-year-old said it also allowed him to forget about it altogether.
“It’s alright because it lets you know that there are other people around your age that have it and suffer the same things,” he said.
“I think it’s one of those things where you more want some help mentally than physically sometimes, because when you’re younger, I think you more want someone to just go and do things with and not think about it.”
But when the family moved back to the seaside after years of moving around the country, they found there were no groups for people with vasculitis.
Although the disease is very rare, Antony believes there must be some people in Hastings and the rest of Sussex who have it and could benefit from a support group.
“There must be people round here with vasculitis and they must be isolated,” he said.
For more information about the disease, visit: www.vasculitis.org.uk.
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