Searching for a way to raise awareness of a little-known, painful disease, reflex sympathetic dystrophy syndrome, also known as complex regional pain syndrome, and commonly referred to as RSD, Janice Novak of Dexter came up with the idea of creating a quilt that, when finished, will cover a football field.

“The Faces of RSD Quilt: Thinking Back and Looking Forward,” will feature 1,000 photos of RSD patients, with quotes they have used to help get them through the difficulties of this disease.

According to information on the American RSDHope Web site, RSD is a progressive disease of the autonomic nervous system that can occur after simple trauma such as a fall, a sprain, a wound or surgery.

Four symptoms for RSD diagnosis are constant, chronic burning pain; inflammation; spasms in blood vessels and muscles of the extremities; and insomnia-emotional disturbance.

There is no cure for the disease which afflicts Novak and others, such as Keith Orsini of Portland.

Orsini has lived with RSD for 31 years.

In 1995, his late father, Bob Orsini, founded RSD Hope Organizations of Maine, located in Harrison, as a support group for those with the disease, and their families.

The American RSDHope Web site, www.RSDHope.org, is the largest RSD Web site in the world, Keith Orsini said.

“That’s pretty good for a Web site out of little old Maine with no paid employees,” he added of the site run by his family as an all-volunteer, nonprofit organization.

When told of Novak’s quilt idea, Orsini said, “We met with her and told her to take this and run with it. This may be the biggest thing to hit the RSD community, once it is done. Our eventual goal is to travel the country with it.”

Novak requests every RSD patient who wants to be part of the quilt provide four things: a smiling, facial photograph; a 1-foot-by-1-foot, colorful piece of cotton-polyester blend material; a quote of 25 words or fewer fitting the theme “Thinking Back and Looking Forward”; and a written release with permission to use the photo and quote.

Quilters from Dexter, Milo, Brownville, Dover-Foxcroft and surrounding communities have volunteered to put it together.

As for the quilt’s purpose of raising RSD awareness, Novak is concerned that “so many young children” are suffering from the disease, “especially young athletes.”

She also wants people to know that while there is no cure, there is effective treatment, if it is diagnosed in its early stages.

Novak, who is 41, came down with RSD as the result of a previous knee injury and was diagnosed in May 2004.

As to what it feels like to have RSD, Orsini was very specific.

“If you emptied all the blood out of your arm, filled it with lighter fluid and lit it on fire, and it burned, 24 hours a day, seven days a week, that is what it feels like. As a patient, it astonishes you everybody can’t see the flame coming out of you on the limb that you have it in.”

But Novak doesn’t want the focus of the quilt to be the pain of the disease.

“I don’t want the quilt to stand for something negative,” she said. “I want it to stand for something positive,” reflecting what has been accomplished in raising RSD awareness, and looking forward to better things to come.

To contribute to the quilt, or for more information, visit www.RSDHope.org.

Under the What’s New section at the top of the page, click on Quilt-Faces of RSD-National Project.

You also are welcome to call Novak, 924-6484, write her, or send your material to her at 140-A Main Street Hill, Dexter 04930.

Kate Hillman, Troy’s oldest resident and honorary chairman of the Troy Veterans Memorial Fund Committee, celebrated her 95th birthday Thursday, June 9.

Age is, obviously, no obstacle to Hillman’s determination in seeing this project through to a successful conclusion.

Freddye Fuller and Jan Cropley, who describe themselves as “members of Kate’s fan club,” report the committee is still working to raise the money it needs for the design it has chosen.

“Kate has been a bundle of energy, pursuing donations,” they reported. She has obtained contributions from, among others, Unity Telephone Co., The Clifford Foundation and Ellsworth Builders Supply.

To date, the committee has raised $1,400, much of it with her help.

Happy belated birthday, Kate!

Joni Averill, Bangor Daily News, P.O. Box 1329, Bangor 04402; 990-8288.