Lupus patient finds new joy as mom, two decades into fierce fight with disease

 

“Giving up” is not in Shannon Draper’s vocabulary. After nearly 20 years of struggling with lupus and the side effects of treatments, Shannon is happier than she’s ever been, thanks to a series of miracles that gave her a husband, her health and a son.

Shannon’s struggle with lupus (systemic lupus erythematosus) began in her mid-teens, with body aches,fevers, fatigue and swollen joints that came and went. Every test came up negative; doctors attributed her symptoms to everything from martial arts to emotions. It wasn’t until an epic crisis that the truth came out.

“I was home in Pictou County after my first year at university, scheduled to work my first back shift at Michelin,” Shannon recalls. “I had a bit of a fever and the chills, so I laid in the sun to warm up… I had no idea this was the worst thing I could possibly do!” (Sunlight can cause serious flare-ups in lupus, an autoimmune disease involving almost any organ system in the body).

Shannon made it to work, but was in such a state of exhaustion, she was taken to hospital in New Glasgow. She has little recollection of the next ten days. What she does remember with horrifying clarity is the conversation with her family doctor. “He told me it could be lupus,” she says. “I refused to believe the disease would have an impact on my life; I was in fierce denial.”

Dalhousie professor and rheumatologist Dr. Evelyn Sutton confirmed the diagnosis. Her lupus diagnosis caused Shannon, then 19, to re-think her plans to become a lawyer, opting for a career in sales instead. But the intense pressure was overwhelming at times—she’s certain it made her symptoms and side effects worse and her treatments less effective.

“I dragged myself around, so bloated in the belly and swollen in the legs from prednisone, I could barely move,” Shannon says. “The side effects were awful—my face was swollen, I developed a ‘buffalo hump’ on my back, my cardiac risk factors were way up.”

Even though 20-year survival rates were as low as 50 per cent at the time, she met the man who would become her husband. He provided her with unflinching support through the darkest days of her disease.

The breakthrough came for Shannon when a targeted biological therapy—the first new treatment for lupus in 50 years—was approved. Dr. Sutton arranged for her to start on the treatment, called Benlysta. Within four months, she looked and felt like a different person. Shannon felt so good, she and boyfriend, Adam Draper, began to consider having a child. The risks of pregnancy and costs of fertility procedures were too high, so they embarked on the adoption process. They had about given up when another miracle happened—a phone call from her father, letting her know one of her young cousins was pregnant and willing to have the baby be adopted.

“It all worked out so incredibly—we have an open adoption, so our son, Mason, has a huge extended family,” she says. “He’s my blood, he’s part of my family, there is so much love for him and for us.” With Adam’s career in the tech start-up sector on the upswing and Shannon happily absorbed in motherhood, the couple was overjoyed to get married last year. Now they are happy to support Dalhousie Medical Research Foundation’s Molly Appeal, which is raising funds for new equipment, crucial to immunology research.

“There is still a lot of room for new therapies in lupus,” notes Dr. Sutton. “Shannon is fortunate Benlysta is working for her—it doesn’t work for everyone.” Shannon is involved in a large multi-national lupus study, run out of Halifax by rheumatologist Dr. John Hanly. She regularly contributes blood samples and fills out questionnaires, which are analyzed to trace disease development and activity, as well as response to treatments, side effects, and complications. Patterns the researchers identify will lay the groundwork for more accurate prognoses and targeted treatment plans for patients in the future.