By YASEMIN TALAT
THIS week communities across Australia are coming together to recognise the thousands of rare diseases and conditions affecting people around the nation.
Rare Disease Day 2014, which falls on 28 February, is a new way of raising awareness for the diseases which affect a small percentage of the population.
Deer Park resident Kath Donaldson has a rare disease known as Guillain-Barre syndrome, or GBS, which is an autoimmune disordered affecting the neuromuscular system.
There is no known cause and no known cure for her condition and there are only one to two cases per 100,000 people annually.
When first diagnosed in 2011, Ms Donaldson said she had no idea what the syndrome was and had never heard of it.
She wasn’t even able to recognise its symptoms.
“It was pretty much left up to me to come home and research it,” she said.
Her vision first blurred on a Friday in August 2011 and gradually the symptoms heightened over the next few days until it began to affect her ability to stand, walk and even speak.
Now Ms Donaldson is active in raising awareness about GBS and supporting those affected by it through three online groups she created and through regular discussions.
“One of the things I’m trying to change is getting information out there for people, so they know they are not doing it on their own and there are people they can talk to,” Ms Donaldson said.
“I didn’t want anyone to feel as alone as I felt,” she said.
“I just want to give them hope, that it’s not all over.”
Ms Donaldson started a page dedicated to GBS on Facebook.
Another page was created to help support kids affected by GBS.
With the help of donations, the kids are sent a turtle and colouring book for support.
There is another page on which exercises and diet tips are shared.
For more information, visit the pages on Facebook: www.facebook.com/GuillainBarreSyndromeAustralia; wwww.facebook.com/Turtles4Kids www.facebook.com/groups/GBSCIDPEXERCISERS.
There are between 6000 and 8000 known rare diseases.
To read more personal stories about Australians affected by rare disease visit www.rarevoices.org.au.
