One in 250 Australians are sufferers of a disease that has no cure, is increasingly prevalent, is most commonly diagnosed in young people and yet is barely spoken about.
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May is the awareness month for Crohn’s disease and ulcerative colitis which are collectively known as inflammatory bowel disease (IBD).
Sufferers are reluctant to speak about their illness for fear of embarrassment and there is little public awareness.
Crohn’s and Colitis Australia (CCA) is hoping the month will raise public understanding and reduce sufferers’ isolation.
Former Bletchington public school teacher Helen Moon said she was diagnosed with ulcerative colitis.
“When I was first diagnosed you don’t know where to go,” she said.
She said initially she felt fine but, “at the end of 2016 things started to go very wrong.”
Mrs Moon said her life had become calculated as she needed to know how close she was to home and facilities in case of a flare-up of the condition.
“You are pretty home bound, it excludes you from a lot of situations because of your illness,” she said.
“It can be embarrassing, you don’t want to talk about it too much, it is very debilitating.
“I have been on so many different medications, if can make you feel not very well either.”
She said she went on an overseas holiday when she suffered a flare-up.
“I ended up in hospital in Sweden for a week, it can hit you really quickly.”
CCA CEO associate professor Leanne Raven said it affected young people.
“This situation can be particularly difficult if a patient is diagnosed as a teenager,” she said.
“Crohn’s disease and ulcerative colitis are young people’s diseases, most commonly diagnosed for the first time in people aged 15 to 35.”
She said about 85,000 Australians were diagnosed with IBD with the number expected to rise to more than 100,000 by 2022.
To raise awareness and funds the CCA’s Orange support group will run a barbecue at Bunnings on World IBD Day, Friday May 19.
Elsewhere famous landmarks will be illuminated in purple.
For more go to www.crohnsandcolitis.com.au