BY DAVE BENJAMIN
Staff Writer
JACKSON – Most people have never heard of Wegener’s granulomatosis.
But Joanne Edley, 42, who has spent a good portion of her life involved in dance in New York City and in Jackson, has learned very quickly about this rare disease, its symptoms and manifestations.
Edley, who has studied dance with well-known teachers and choreographers and who has appeared in the movies “Times Square,” “Blow Out” and “Eddie and the Cruisers,” is dealing with the effects of the disease right now.
Edley’s friend Donna Corman said, “Last summer Joanne was having some unusual health problems along the lines of sinus infections and some bronchial symptoms that were unexplained at first. After quite some time she was diagnosed with the very rare disease.”
Wegener’s granulomatosis is characterized by the inflammation of blood vessels, which results in the reduction of oxygen in the blood and can result in damage to vital organs and normal tissues. Although the disease can damage any organ, it usually affects the respiratory system, sinuses, nose, windpipe and lungs. The disease can strike at any age and affects men and women equally.
According to the Office of Rare Diseases of the National Institute of Health, the disease is considered to be extremely rare.
Edley was in a New Jersey hospital for more than a month while doctors tried to stabilize her. She went home and was later admitted to a hospital in Philadelphia where she had access to the specialists she needed, Corman said.
She has been recuperating at home between doctor visits, tests and consultations.
“She is getting better,” Corman said. “Unfortunately, her lungs are [not in great] shape and the drug regimen she has makes it dangerous for her to go out or to receive visitors.”
Prior to developing the disease, Edley worked as a teacher-owner at All That Dance, Chandler and Jackson Mills roads. Edley said she expects to return to work at the dance studio sometime this summer.
In the meantime, her husband, Mark, a carpenter, has been unable to work steadily, since he has had to transport his wife to and from doctors’ offices and hospitals.
“The difficulty is that during all this time, she has been unable to work at the dance studio,” Corman said. “Having to pay folks to do what she normally would do means that she is unable to pull much of a salary from the dance school.”
Corman said she and some family supporters, Michele Young and Michael Kafton, have helped to establish a fund for the family to assist with medical bills.
The Edley Family Fund has been established at Sovereign Bank, West County Line Road. Anyone wishing to make a contribution to the fund (not tax-deductible) can do so at the bank or can send a contribution to the Edley Family Fund, P.O. Box 536, Jackson 08527.
A basketball fundraising event scheduled for April 14 at Jackson Memorial High School is being planned for the Edley family.
The fundraiser, “We’re Going Hoops for Miss Joanne,” is a cooperative event between the Jackson Police PBA Local 168 and the Jackson Fire Department. Dancers from All That Dance are expected to perform during the game’s halftime.
Fore more information about the event, call Michele Young at (732) 433-5773.