EVANSTON REVIEW - DECEMBER 18, 2008

Lynne Orsini is the president of American RSDHope, a nonprofit organization named for Reflex Sympathetic Dystrophy Syndrome, which is what CRPS was formerly known as. Orsini started the group in 1995 as a way to spread information about CRPS and resources for families facing it. Her son, Keith, was diagnosed with it in 1974 and has been fighting it ever since, she said.

She also said that Colleen Pacholski's experience is the rule more than the exception for parents.

"Once they go online and read about it, it's scary," she said. "When you read that your child may have this for the rest of their life it's scary. It's a very, very painful disease and you watch your child and there is very little you can do. As a parent you feel helpless."

The feeling of helpless is compounded because so few people know about the disease.

"There are not a lot of places we can send people for help. The best thing we can do is put the parents in touch with a parent who has a child the same age who has gone through this, tell them where they have gone for help and what has helped and what hasn't," said Orsini.

The organization now has a network of families across the United States, she said. They also have groups in Canada, Australia, Europe and South Africa. The group also has online support groups and takes phone calls.

"I get phone calls all the time," she said.