Carolyn Comyns' illness has made her grateful for each day she can get out of the house. It's inspired her to make sure other people with the disease don't feel like they are suffering alone.
The Shortland resident has been announced as the recipient of Newcastle Permanent's annual volunteering award - the Chairman's Medal. The 69-year-old has served as the "go-to lady" of Newcastle charity, the Autoimmune Resource and Research Centre (ARRC), since she was diagnosed with two autoimmune disorders 11 years ago. She says lupus and Sjogren's syndrome have redefined what is normal in her life. Sjogren's, where the immune system starts attacking cells that produce tears and saliva, means she even has to use a special kind of toothpaste.
"Lupus is where the immune system starts to attack the body. It's the same as if you had cut yourself or had a splinter but it is responding to your own body," Ms Comyns said. "Everyone is at various degrees and everyone's lupus is different. It can attack any organ in the body. Fortunately, mine is under control.
"You get terribly tired and lots of joint pain. Your body doesn't adjust to temperature well, so you can be very hot and very cold.
"Because of Sjogren's I have dry eyes, dry mouth, dry skin. I don't make enough saliva in the mouth and then that affects your digestion."
She said she uses "various treatments" to manage her illnesses, but they will never be cured completely. Scientists are still trying to work out what triggers the body to turn against itself.
Despite this, Ms Comyns said being diagnosed with an autoimmune disorder was a "huge relief".
"I felt relief that it's got a name and that there's a reason you're feeling awful. It's not in your head. It was things I was struggling with for years. I really struggled to explain it to other people," she said.
Part of Ms Comyns' volunteer role with ARRC is running a monthly meeting group in Shortland for sufferers of autoimmune diseases.
"We just get together and have a chat and support each other," she said.
"It makes you feel so much better hearing the little things they might have done differently to manage it, or what they've found out about the disease. It's so nice to be with people who more or less know how each other feel."
ARRC will receive a $3000 grant from Newcastle Permanent in recognition of Ms Comyns' volunteer work. The money will help the charity to continue to educate patients and raise the profile of autoimmune diseases nationwide.
"It will allow more people to be reached, to pass on more information and guide others through their journey," Ms Comyns said.
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