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Campaigning group marks first birthday

PUBLISHED: 14:25 16 February 2010 | UPDATED: 08:11 02 July 2010

Some of the members of the Sarcoidosis support group.

Some of the members of the Sarcoidosis support group.

Sam Emanuel

He may suffer from a whole host of painful symptoms, but a Lingwood man has not let his illness hold him back and is now celebrating the first birthday of the group he set up to raise awareness of the rare condition.

He may suffer from a whole host of painful symptoms, but a Lingwood man has not let his illness hold him back and is now celebrating the first birthday of the group he set up to raise awareness of the rare condition.

A year ago, Keith Bigland set up the Sarcoidosis Awareness Society, and since then the group has made incredible progress, working with the government's Department for Work and Pensions (DWP) to ensure the guidelines for benefits fully recognise the condition and so ensure Disabled Living Allowance claims by sufferers are not rejected.

Sarcoidosis is an inflammatory condition that causes the body to attack its organs and can sometimes prove fatal. It took doctors more than two-and-a-half years to diagnose Mr Bigland with the condition, as it has similar symptoms to many others, including disorientation, fever, memory loss, joint pains and tremors.

As well as the work with the DWP, Mr Bigland, 42, has organised a 733 signature petition to urge Gordon Brown to push for more research into the condition, and commissioned a nationwide survey into its effects, which he hopes people will be able to take to the doctors with them to assist with diagnosis.

The group celebrated its first birthday last week at its regular support meeting in Lingwood.

Mr Bigland said: “I'm very pleased with how the first year has gone. We have been very busy and achieved a lot. Our website has about 20 hits per day from people all over the UK who are looking for accurate information about Sarcoidosis. After the petition to Gordon Brown in July, I did an international one which got another 860 signatures.

“Then we did a survey, which took a long time to collate, especially while I was having fuzzy head periods, but I did it eventually and I hope it will be useful. It provides evidence of the struggle for acceptance and recognition with medical and government departments, and confirms our fears that diagnosis is very patchy with the most relevant tests frequently missed out or misread.”

For more information about the organisation or the condition, call 0808 186 1886 or visit www.uksarcoid.org.

Are you doing something positive for your community or are you battling a serious condition? Call Sam Emanuel on 01603 772438 or email sam.emanuel@archant.co.uk.

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