Press-Republican

November 27, 2012

Scleroderma support group forming

By JEFF MEYERS
Press-Republican

---- — PLATTSBURGH — A support group for people with scleroderma is forming in the Plattsburgh area.

The group will meet from 4:30 to 5:30 p.m. on the first Wednesday of each month in Auditorium A of CVPH Medical Center, with the initial meeting slated for Dec. 5.

“Since I was first diagnosed in 2005, I’ve met quite a few people up here who were diagnosed with the same thing,” said co-organizer Wendy Faubert.

“For me, there was no one to talk to about scleroderma, to share my thoughts with and who understood what I was dealing with.

“I think a support group will be so beneficial for anyone who has to face those things I had to face alone. It’s always so nice to know there’s someone there to talk to.”

AUTOIMMUNE DISEASE

Scleroderma is a rare autoimmune disease that causes the body’s immune system to attack and destroy healthy tissue, impacting the skin, blood vessels, muscles and internal organs.

The cause of the disease is unknown. People with scleroderma typically have a buildup of collagen in the skin and other organs that lead to symptoms of the disease.

Faubert’s initial symptoms included a growing level of fatigue. The illness was actually diagnosed during routine blood work done for a regular checkup, she said.

SHARING INFORMATION

Melody Breen and Lori Roebuck have joined Faubert as founding members of the Adirondack Scleroderma Support Group, which has been sanctioned by the Tri-State Chapter of the National Scleroderma Foundation, located in Binghamton.

“It’s an opportunity for individuals with scleroderma to learn more about the support that is available,” said Kate Duprey, who helps organize the local Stepping Out to Cure Scleroderma annual fundraiser.

For instance, patients with the condition have had varying degrees of success with certain physicians and can share their experiences with one another, Duprey noted.

“I feel more people have it than we know about or are just not diagnosed,” Duprey said of the incidence of scleroderma in the North Country. “I know of the three current women, three who have passed away and two more who have recently been diagnosed.

“Scleroderma is a disease that a lot of people don’t know about,” she added. “It can progress slowly, but it can also progress very rapidly.”

Scleroderma has two major types: one that is localized and typically affects the skin and another — specifically referred to as systematic scleroderma — that attacks the kidneys, lungs, stomach and other internal organs.

GIVING BACK

Duprey’s husband, Randy Duprey, was inflicted with an extremely aggressive version of the disease and died at age 26 from complications from scleroderma in January 2009, fewer than four years after he was first diagnosed.

“We were planning our wedding; we were building our house,” Kate Duprey said of the couple’s plans, before his illness, for a future together.

“Randy was feeling fatigued (during those early months before the illness was diagnosed). His fingertips had turned purple, and ulcers had formed on his fingers.”

The condition was first diagnosed as eczema and Reynaud’s phenomenon, a condition that includes a purplish discoloration of the fingertips. Scleroderma was correctly pinpointed a short while later when other symptoms developed as disease progressed to his lungs. 

He eventually had to leave his job as a correction officer at Dannemora. He underwent a stem-cell transplant in an effort to curb the assault within his body, but he succumbed to the disease on Jan. 6, 2009.

“Randy’s mission was to give back to the community that helped him so,” Duprey said of the support the family received. “After he died, we wanted to fulfill his mission through the annual walk.”

Proceeds from the event’s registration fees go toward scleroderma research, but organizers also hold auctions, raffles and other activities during the walk to raise money to be used for people in the area who need financial support for scleroderma treatment.

As the Adirondack Scleroderma Support Group takes shape over the next few months, Duprey is also hoping to form a support group for loved ones and caregivers of people with the disease and those who have lost loved ones to the scleroderma.

Email Jeff Meyers:

jmeyers@pressrepublican.com

SUPPORT GROUP The Adirondack Scleroderma Support Group will hold its initial meeting at 4:30 p.m. Wednesday, Dec. 5, in Auditorium A at CVPH Medical Center. For more information or to access the support group's Facebook page, email Kate Duprey at beball34@charter.net or call 569-7927. Also, anyone with scleroderma who would like more information on financial support for managing the disease can contact Duprey.