When it’s at its worst, Samantha Delo says, she feels like her body is waging a war — against itself.
Near-constant exhaustion, chronic stomach problems and what’s become routine pain are a few of the ways lupus manifests itself in the 16-year-old’s body’s cells, tissues and organs. From one day to the next, “you never know what it’s going to be,” she said.
“It’s really hard to explain” the disease, Delo said, and “if you don’t have lupus, it’s hard to understand where I’m coming from.”
That lack of understanding about the potentially life-threatening disease — which affects upward of 2 million people in the United States and nearly 70,000 in Pennsylvania — is one of the main reasons Crawford County Career and Technical Center students, led by seniors Stacey Proctor and Hannah Mierke, recently used their cosmetology skills to raise funds for the Crawford County Lupus Support Group.
Over the course of two day-long events in the past two weeks, the students booked appointments for low-cost cosmetic services — everything from haircuts and highlights to facials and pedicures — and raised what was estimated to be close to $1,000 along with providing their customers with information about what lupus is, who it affects and how they can help efforts to fight it.
Proctor said she first began learning about the disease through Delo, who’s a close friend. She participated with Delo and her family in last year’s local Lupus Loop fundraiser to raise money for the Lupus Foundation of Pennsylvania. “Just hearing the stories they told,” Proctor said, further inspired her to take a fundraiser on as a senior project.
And “we figured we could use our talents to help,” said Mierke.
Officially diagnosed with lupus in March 2009, Delo is among those living with a lifelong disease that, for what are still unknown reasons, causes the immune system to attack the body’s own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood and skin.
Despite the challenges that come with having the disease, Delo works part-time at a local assisted living facility, has gotten her driver’s license and continues getting her high school education through home-schooling. She also continues making routine visits with medical experts to determine what may the best course of treatment for her, and taking part in the county Lupus Support Group.
“We don’t know what the future holds, but we hope for the best,” said her mother, Suzanne Delo. “You never know what’s going to happen in the long run.”
Ryan Smith can be reached at 724-6370 or by e-mail at rsmith@meadvilletribune.com.
Get involved
The Crawford County Lupus Support Group is open to all people with lupus, as well as their family and friends.
The group’s major objective, according to organizers, is to provide a warm and caring environment where experiences, methods of coping and insights to living with a chronic illness are shared.
For meeting dates, times, locations and more information, call organizer the Lupus Foundation of Pennsylvania’s Erie-area office at (866) 292-1472.
Did you know?
Lupus is a lifelong disease that causes the immune system to attack the body’s own tissue and organs.
Approximately 1 in 200 have lupus, according to the Lupus Foundation of Pennsylvania, a non-profit health association that works to promote awareness, education, service and research for those affected by the disease.
For more information — including ways you can help — visit www.lupuspa.org on the Web, or call the foundation’s Erie-area office at (866) 292-1472.
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