Some Prince Edward Islanders who took part in a trial for a new experimental drug therapy can't afford it now that the successful trial is over.

'Maybe before I die I'll be able to have it.'— Rachel Doherty

The Islanders suffer from a rare genetic disorder than makes them allergic to cold. Sufferers feel like they're freezing from the inside out, and can develop a painful rash, swollen limbs and fever.

"We were sick in bed with the chills, and your teeth chattering," Rachel Doherty of O'Leary told CBC News Monday.

Doherty, 62, has suffered from familial cold autoinflammatory syndrome for decades, and passed it on to her 32-year-old daughter and 12-year-old granddaughter. Until recently, there wasn't even a name for the rare syndrome. About 80 people in Canada, all relatives of Doherty, suffer from the disorder.

Temperatures as mild as 24 C can trigger the syndrome.

In 2005, Doherty and eight of her family members were invited to participate in a clinical trial at Dalhousie Medical School. They were injected with anakinra, a drug used to treat rheumatoid arthritis, and according to Dalhousie dermatologist Dr. Barrie Ross, it worked.

"They had a family wedding. They went outside; it was pouring with rain; it was very cold; and three or four of them who had the medication danced and sang in the rain, because this was the first time they had ever been able to do this in their lives," said Ross.

But once the clinical trial ended, there was no more dancing in the rain for Doherty. Although an effective treatment was available, it cost $15,000 a year and she couldn't afford it.

"I felt very beaten and defeated after the clinical research was over, and I realized that I was not able to afford it, and I would probably never be able to afford it," she said.

"Maybe before I die I'll be able to have it."

Doherty said she asked for help from the previous provincial government to no avail. A spokesperson for the current government said it's looking into the issue.