A Special Day: a lupus story

 In Story Sharing Project

October 4, 2012 was a special day for Debra Lynch, an elementary school principal in the Lemont-Bromberek school district. She was planning a special lunch at school for the staff, to thank them for supporting her over the past year. But what she believed would be a small gathering of teachers turned into an all-school celebration! “When I got to school, I saw that everyone – staff and students – were dressed in purple, awareness ribbons were on all classroom doors and on each staff member. The reason? It was Deb’s one year anniversary of taking Benlysta, the only FDA approved lupus treatment and the reason, as Deb puts it, she has her life back.

Lynch suffered with lupus for six years before getting a definitive diagnosis. Her main symptoms included fatigue, fevers, swelling, aching joint, gland swelling. “I’d sleep away weekends,” she says. “I had no energy at all.” Like many lupus patients, getting a diagnosis can be a challenge. She had officially been diagnosed with an undifferentiated connective tissue disease with features of lupus and Sjogren’s Syndrome. Although she was treated with lupus medications, getting an official diagnosis was elusive. Her symptoms got worse – the last 1 ½ years particularly bad.

Lupus is a chronic autoimmune disease that can become fatal. The best defense is early diagnosis and treatment. There is no single test for lupus which means the disease is symptom diagnosed.

Eventually, Lynch’s doctor, Dr. Richmond, recommended a specialist at Rush. Dr. Katz, a rheumatologist with 30 years of experience treating lupus, is also a researcher and conducts clinical trials studying potential new lupus treatments. Within 20 minutes of seeing Lynch, Dr. Katz was able to provide her an official lupus diagnosis and a treatment plan. The treatment plan included Benlysta.

That first appointment with Dr. Katz was life-changing for Lynch. “In twenty minutes, Dr. Katz changed my life. He gave me a diagnosis, a treatment plan and hope,” she says. “Because of him, I’m able to work at a job I love. Dr. Katz gave me hope and then he gave me my life back.”

Teachers at school only found out about her lupus just as she was starting Benlysta. Her lupus was getting worse and she’d started on a high dose of steroids, resulting in a 35-40 lb weight gain in two months. “The staff was concerned,” Lynch says. “I finally addressed those concerns by telling them I had recently been diagnosed with lupus and I was starting a new treatment soon.”

Benlysta is the first FDA approved lupus drug in more than 50 years. Benlysta is given once a month intravenously. Lynch’s first visit with Dr. Katz was at the end of August 2011. Her first Benlysta treatment was October 4, 2011.

“Benlysta changed my life,” Lynch says. “Once I started on the drug, every month I got a little bit better. By the sixth month, I was feeling better the whole month,” she says. Benlysta is a treatment not a cure for lupus, there is no cure. Lynch still lives every day with the reality of having a chronic illness. Although now, with Benlysta she is better able to manage that illness and get on with her life.

“I refer to Benlysta as my boyfriend Ben,” she says. “My husband, Bill, is fine with that – since we both feel I have my life back. Although he does say it’s the only boyfriend he won’t get jealous of!”

Despite the struggles of living with a chronic illness, Lynch is an optimist. “I don’t know how I got to be so lucky,” she says. “Good husband, good job, good doctors– life is worth living!”

And the staff and students at the Lemont-Bromberek school district feel the same way – which is why they chose to recognize Lynch on her very special day. Students weren’t told of Lynch’s diagnosis –just that wearing purple was a way to honor their principal. It worked, not only was Lynch surprised, but she was touched. “I cried tears of joy all day.”

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