Jamie Mangelinkx used to be that person. You know the type: Always going, going, going. “There never were enough hours in the day to do everything I wanted,” says Mangelinkx, 49. “On Saturday, I’d play 18 holes of golf. The next morning, I’d wake up and do it again.”
Her professional life spanned many different fields—retail, design, healthcare. She’d gone back to school and had almost finished the classwork she needed to apply to dental school, when she developed a cough. It wouldn’t go away. The cough worsened, yet she avoided the doctor, fearing a dire diagnosis. When she finally saw her physician, he took CT scans and x-rays of her lungs. The news was as bad as she could have imagined: lung cancer.
Mangelinkx’s doctor in Enid referred her to a pulmonologist in Oklahoma City, who performed a lung biopsy. But rather than confirming the earlier diagnosis, she received a new one. “They told me I had sarcoidosis.”
The disease takes its name from the tumor-like lumps it causes, which researchers initially believed to be a form of sarcoma, a type of cancerous tumor. The lumps, known as sarcoids or granulomas, are not cancerous. However, they cause intense bouts of pain. And if too many form in a single organ, it can lead to organ failure or even death.
The rare illness, which strikes fewer than 1 in 2,000 Americans, seems to start in the immune system, eliciting rampant inflammation. So, doctors typically try to combat it with drugs that suppress the immune system.
“I hope that researchers can take what they learn from me and help somebody else.” Jamie Mangelinkx
For Mangelinkx, that meant high doses of steroids. Bed-bound, her weight ballooned to almost 300 pounds. She had to use a walker, and the drugs destroyed her teeth and caused uncontrollable shaking. “Between the disease and the treatments, it robs you of so much,” she remembers. “I’d been a free spirit who traveled and golfed and scuba-dived. And now I couldn’t get out of bed without help.”
Eventually, the steroids stopped working, and the disease began to attack other organs. Physicians found granulomas in her heart and her eyes, where they’ve begun to affect her vision. “What you’re looking at is like a puzzle, and you can have pieces missing,” she says. Doctors are now treating her with methotrexate, an immune-suppressing drug often used in chemotherapy. She has “good days and bad days,” but she is faring better under this regimen than with steroids. Still, she can’t work, and she wonders why a disease so rare has struck not only her, but also her sister.
This past March, OMRF’s Dr. Courtney Montgomery received a grant from the National Heart, Lung and Blood Institute to try to help solve this mystery. “Our team has led the charge to define the role of genetics in sarcoidosis,” she says. “However, there are still many unknowns at work in this complicated disease, and this grant will help us explore possible solutions to these unanswered questions.”
The grant will also help Montgomery recruit new patients and healthy volunteers to collect samples for OMRF’s Sarcoidosis Research Unit, the only one of its kind in the state. “Our goal is to enroll 200 patients and match them with healthy controls—those without a sarcoidosis diagnosis,” says Montgomery. “Through this work, we hope to better characterize what exactly is going wrong in the body and discover what triggers the disease.”
Among those participating in the study is Mangelinkx, who made the drive to OMRF from Ponca City, where she now lives. After she filled out questionnaires and donated blood for research, says Mangelinkx, “Dr. Montgomery sat with me quite a while. That was really neat.”
Mangelinkx understands that any findings most likely will not benefit her directly. Still, she’s happy to lend a hand in any way she can. “I hope that researchers can take what they learn from me and help somebody else.” Dr. Courtney Montgomery