Traverse City Record-Eagle

Life

February 23, 2013

Lupus support group is source of camaraderie

TRAVERSE CITY — When Sue Malone, a Traverse City mother of three, was diagnosed with lupus six years ago, her first reaction was relief because she finally knew why she felt like she had the flu all the time.

Then came grief.

An estimated 1.5 million Americans, including 60,000 in Michigan, suffer from the chronic inflammatory disease that prompts the immune system to attack healthy tissues and organs. About 90 percent of the sufferers are women.

It is a “mystery” disease, its cause yet unknown and a cure yet to be discovered.

But diagnosis isn’t a death sentence, said Tom McClellan, facilitator of the Lupus Support Group that meets monthly in Traverse City.

“When doctors say there’s no cure, it only means you can’t take a pill to make it go away,” he said. “There are many things you can do to manage it and live with it.”

Symptoms may be limited to the skin, but more often lupus also causes internal problems such as joint and muscle pain, extreme fatigue or damage to the central nervous system and blood vessels. In severe cases, it can harm the heart, kidneys, lungs and other vital organs. Other common symptoms include skin rashes, nail changes, hair loss, itchy scalp, fevers and sensitivity to sun, fluorescent lights and other forms of ultraviolet light.

The wide variety of symptoms and a general lack of lupus education and awareness make it hard to diagnose.

“You can have 20 people in the room and no two of them will have the same symptoms,” said Paul Patchen, whose wife, Violet, was diagnosed in 1976 when she was 55. It still was commonly believed then that people diagnosed with lupus would die within 10 years.

Violet is now 91.

The Patchens, who live in Antrim County, have regularly attended the support group for years for the camaraderie and to share their years of experience and research about the disease.

Text Only