Norma Judd was forced to give up her five-acre property after a year of hell in which she struggled to walk and make basic movements.
Ms Judd, from Wagga, believes she is literally one in a million suffering from stiff person syndrome, which caused the bottom half of her body to spasm and stiffen, leaving her completely helpless.
When Ms Judd first started suffering spasms in her feet, she was scared out of her mind.
The spasms gradually spread from her feet to the top of her waist.
Ms Judd put the pains down to cramps and doctors offered her little explanation or solution for her pain.
She was sent to a specialist in Sydney after a year of suffering and was diagnosed with stiff person syndrome.
“They started off as spasms and then I would get stiff and couldn’t walk at all for about 30 minutes at a time,” Ms Judd said.
“It was so scary not being able to walk properly – if I sat I couldn’t stand up, I couldn’t drive, couldn’t do anything.”
Ms Judd said the pain and limited movement caused her to give up her five acre property at San Isidore and move to Glenfield Park.
While Ms Judd has since found successful treatment, the rare disease is incurable, and still causes her stiffness each morning.
Ms Judd now wants to use her experience to help others and start a support group in Wagga for people suffering from rare diseases.
“I believe I’m the only person with stiff person syndrome in the area but it would be nice to connect with other people who have a rare disease,” Ms Judd said.
“It’s amazing how much the treatment has helped me but other people aren’t so lucky.
“People suffering often have the same problems and need some support.”
She hoped to meet with anyone interested on Rare Diseases Australia Day on February 28.