A Prescription for Living with Scleroderma
When JoAnna Harper was first diagnosed with systemic sclerosis at 15, her doctors said that she might have five years to live. By the time she was 21, they said it might only be another two years. “It was at that time that I looked at the providers and said, ‘I want to do this and I don’t have time to die here.’ It was the attitude that I had to take,” she said.
Now 36, JoAnna has a scleroderma story that begins like many others you may have heard. She first was diagnosed with Raynaud Phenomenon at 12 years old. Then, it progressed to scleroderma three years later. Yet, the doctor diagnosing her couldn’t even say scleroderma properly so she was sent to see a specialist at the University of California, Los Angeles (UCLA).
JoAnna, who also was later diagnosed with lupus, was a difficult patient who challenged and questioned her health care team. “There were times I asked providers, ‘Would this affect my growth or will this affect if I can have children?’ I refused taking medications when no one could give me an answer,” she recalled. “Most of the time, they had to scare me into taking medications, telling me it was life or death. I finally realized that disease progression doesn’t stop if you refuse to take your medication.”
“Doctors only know what the books tell them or what their past experiences are. They can’t tell you what you can do as an individual and what you’re capable of doing.”
Living through the challenge of a chronic illness, JoAnna was driven to go to medical school and follow in the footsteps of her own rheumatologist, Dr. Philip Clements from UCLA. However, the grueling schedule was too much for her physically. “I found the next best career, pharmacy, where I could still be a part of the medical team and have interaction with patients, but the school and training requirements weren’t as taxing on me.”
“I was going to make it no matter how long it took me,” she said. In the end, an eight-year program took JoAnna an extra year and a half to complete. Despite some health setbacks, she never missed a class, and today, she is a clinical pharmacist with a Doctor of Pharmacy degree. In her job, she works closely with patients’ medical teams to ensure that a medication’s dosage is correct or that a prescribed drug is right for the condition that a doctor is trying to treat. JoAnna also assesses a patient’s allergies to make sure drugs won’t interact with any other medications he or she may already be taking.
For several years, JoAnna has led workshops at the Scleroderma Foundation’s National Patient Education Conference. This year, she presented a new session titled “Demystifying the Pharmacy World,” which examined prescription drugs, over-the-counter medications and herbs, and how you can better understand the role a pharmacist plays in your medical team.
JoAnna has also taken part in the National Conference from a patient’s perspective. She has participated on a panel discussion for older youth and young adults. This led to the forming of some special bonds with other individuals living with scleroderma. “There are a few of us who were on that panel; we still get together. We call ourselves ‘The Not-So-Youth Group’ now,” she laughed. “But really, I thank my scleroderma family for helping me along this path and allowing me to grow as an individual.”
“She is a pillar of strength.”
Friendships that she has made throughout the years span the country. “JoAnna and I met about 14 years ago. It was my first conference and I was feeling pretty overwhelmed,” said Kris Garthe, the Seattle support group leader from the Washington Evergreen Chapter. “JoAnna’s smile, sense of humor and strong will to fight anything that gets in her way is contagious. It’s been such a pleasure to watch the many things she has accomplished.”
Another friend Natalie Puccio-Murdolo said, “She is a pillar of strength and an amazing resource in our scleroderma community.” Puccio-Murdolo is the Bergen County, New Jersey, support group leader for the Tri-State Chapter. Kris and Natalie were members of the bridal party at JoAnna’s wedding earlier this summer in Idaho. “I was thrilled to be a part of her wedding, and that moment solidified us as family,” said Puccio-Murdolo.
The next challenge that JoAnna and her husband, J.C., will tackle will be as parents. The couple is pregnant with their first child. “We want to settle in as a newlywed couple and start a family. We just purchased our first house,” said JoAnna. Additionally, she hopes to return in 2015 to medical mission work in Haiti, where she has previously helped in a clinic for malnourished and ill children.
JoAnna Harper, Pharm.D., is a registered clinical pharmacist at St. Luke’s Regional Medical Center in Boise, Idaho.