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Woman raises profile of rare disease

PUBLISHED: 17:36 09 October 2008 | UPDATED: 09:11 13 July 2010

A NORTH Norfolk woman is defying extreme fatigue and other symptoms to spread the word about a chronic condition that is almost unknown to the public.

Anne Conlon is running a nationwide website and has written to scores of political leaders to raise awareness of sarcoidosis.

A NORTH Norfolk woman is defying extreme fatigue and other symptoms to spread the word about a chronic condition that is almost unknown to the public.

Anne Conlon is running a nationwide website and has written to scores of political leaders to raise awareness of sarcoidosis.

The condition, which affects the lungs in most sufferers, shows itself with tiny lumps (granulomas) that develop on and inside the body. It leaves people with severe tiredness, fevers and weight loss and can spread to internal organs and cause other complications.

It was given some prominence this week when cricketer and former Strictly Come Dancing winner Mark Ramprakash told how his father-in-law Dhirendra Bhatt, 63, had died from sarcoidosis. The same condition also recently killed Hollywood comedian Bernie Mac.

Mrs Conlon, 50, from Gimingham, was diagnosed with sarcoidosis two-and-a-half years ago. The condition has knocked her sideways, but she has taken over the website www.sarcoidosissupport.

ning.com, and is determined to increase awareness of it. She said: “There's very little known about it. Doctors and specialists are not particularly up on it and it is very difficult to treat.

“Monday was sarcoidosis awareness day, and I decided to email as many people as possible, including MPs, MEPs and others to do something about it. We want to make people much more aware of it. There could be thousands of people walking about not knowing they've got it until it becomes active.

“I found out because I started off with shingles in my face. When it went I was left feeling very weak and had all sorts of tests. A bronchoscopy on my lungs showed that I had sarcoidosis.”

Mrs Conlon, who lives with her husband Chris, said: “I've got the lumps in my lungs and lymph nodes. I feel completely fatigued 24 hours a day, seven days a week. I struggle to get about, struggle with cooking and my day-to-day living. The fevers mean that, while others are cold this winter, I will be hot.”

To find out more, email anne-conlon@hotmail.co.uk


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