When you first meet Heidi Givler, you are aware of her positive, energetic approach to life. It is only as she begins talking about some of her passions – baking contests and street racing, to name a few – that you realize she is also passionate about lupus, the disease that impacts her daily.
Givler, who lives in Lenhartsville and works in Hamburg, was diagnosed with the inflammatory/immune disease as an adult in 2009.
“But I think I was born with it,” she says, recounting a history of childhood illnesses and responses to stress.
According to Lupus.org, 1.5 million Americans have the disease. Symptoms include dizziness, mouth and nose ulcers, migraines and fatigue. Some patients struggle with sun sensitivity, fevers and trouble with short term memory. For most, the type and severity of symptoms varies by day.
Lupus is most prevalent among African Americans and women, Givler says, but affects all races and genders. Givler’s mother and two brothers have the disease. Her sister, Cherylanne, died from complications of lupus and scleroderma five years ago.
“People don’t realize Lupus is a “look good” disease,” Givler says, explaining, “You look good, but you feel like crap. It’s like a roller coaster of ill feelings from head to toe.”
At age 51, she must take regular prescription pain medicine to cope with the pain. She notes medicines help quiet symptoms but also cause difficult side effects. She spends about $20,000 out of pocket each year on acupuncture, therapeutic massage, doctor co-pays and over-the-counter medications.
Givler channels her frustration with the disease into work as an advocate. She participates with the Philadelphia Tristate Chapter of the Lupus Foundation of America (LFA), and educates individuals at high schools and community health fairs.
She’s also traveled to Washington, D.C., to campaign for Lupus patients.
“When we go to the lawmakers, it is to get laws on the book to help find the cure, because there is no cure for lupus,” she says. “And to get help with the medicines.”
Givler is also a passionate Lupus fundraisers, organizing bingo events and participating in cooking contests as a platform. So, she was thrilled when Annette Myarick, CEO of the Philly chapter, invited her to the LFA National Gala in New York City last fall. Givler attended with both of her brothers, and they brought with them a framed photo of Cherylanne.
The plated dinner included a silent auction, and Givler bid on – and won – an item donated by Tim Nolan, creative director for the A&E network. The prize was to have an outfit designed by a Project Runway designer.
“We’ve been working on this since the minute I won it,” she says, and she was thrilled when she found out her designer would be Sean Kelly, the winner of season 13 for Project Runway. Givler is a fan of the show.
“I tape it if I’m not here,” she admits. “I’ve been watching it since the very first episode.”
She especially loves show producer/designer mentor Tim Gunn, who himself is a Lupus awareness supporter.
“He always says, ‘Make it work.’ And that’s become my motto,” Givler says, because it relates to illness or the workplace. “Whatever you are dealt with in life, make it work!”
Recently, Givler reported to Dietrich’s Men’s Shop in Hamburg. There, owner Les Werley took her measurements for Kelly. Then, on May 13, Kelly called Givler to talk through design concepts.
“He’s so cute sounding with that [New Zealand] accent,” Givler says. “He pretty much interviewed me, asking how I got the prize and what it represents.”
She asked that the dress include purple (her favorite color and also the Lupus awareness color), plus peridot green for her mother and pink to honor her sister. Myarick is thrilled with these color concepts.
“She certainly did not have to do that,” Myarick said, “but Heidi is truly a lupus champion! Putting on purple and sharing why helps to make the conversation about lupus, and that leads to awareness.”
“He’s going to do his best to incorporate them,” Givler said. “And I also love his fringe style, but it’s all up to him.”
Givler hopes to get sketches from Kelly soon, and will eventually travel to New York to be fitted for the design. She hopes to wear it one year after she won it, at the 2017 NYC gala.
In the meantime, Givler plans to finish her drag-racing station wagon, celebrate her tenth wedding anniversary and decide the best time to run her next Lupus fundraiser. Givler also anticipates walking in a Lupus Walkathon at Desales University on Saturday, June 3.
On average, Myarick said, it takes six years for a patient to get a diagnosis of lupus. For more information about the disease, its signs and symptoms and the medical resources available, readers may visit www.lupus.org.
