It can be hard to get the right diagnosis.
The internet has all the answers. Maybe too many. In 2017, when Alyssa Higdon’s primary care provider (PCP) told her that she had plaque psoriasis, she naturally went online to learn more.
The tidal wave of information was daunting, she says. But when she searched for a connection between psoriasis and the back problems she’d experienced since she was 11, she discovered psoriatic arthritis (PsA) and the alarm bells rang. She read that you shouldn’t let your PsA go untreated for more than six months. In her case, 15 years had passed.
“There’s so much information out there, it’s intimidating and also depressing,” she says. “I thought to myself, ‘I’m 26 years old, and my life is basically over before I even have a chance to live it.’ ”
At age 11, her back “locked up on her,” as she recalls. At age 14, doctors said she had scoliosis, but they couldn’t understand why she was in constant pain.
“I became used to the pain,” she says. “It became normal.”
Higdon lives in Atwater, California, with her boyfriend, Garrett, and their daughter, 3-year-old Emery. While she was pregnant, Higdon developed red, flaky, swollen patches that would scab and bleed on the backs of her hands and on her feet and legs.
The patches went away a few weeks after Emery was born, but they returned a year later amid the stress of going to college and taking care of an infant. This time, they appeared on her right foot and changed how she walked. Higdon has had mild eczema on the front of her legs most of her life, but this was different. “I thought, that is not eczema,” she says. “It itches so much.”
After four months of trying to deal with it, Higdon woke up one morning and was so hunched over she could barely walk or pick up Emery.
Her PCP sent her to an orthopedic surgeon. The surgeon could see the arthritis in Higdon’s X-rays and in her MRI, but couldn’t tell her anything beyond that. When Higdon went back to her PCP, her psoriasis was flaring. This helped her doctor make the diagnosis of plaque psoriasis.
Meanwhile, Higdon had discovered NPF’s Patient Navigation Center during one of her marathon online searches. “I figured I had nothing to lose by calling in,” she says.
Ready to listen, able to help
Higdon told her Patient Navigator everything that had been going on with her, starting with her first back problem. She describes her navigator as sympathetic and a good listener. But her navigator did more for Higdon than lend an ear.
The navigator told Higdon that, though she may have been misdiagnosed for 15 years, she didn’t have to live like this. “She helped me sift through all the information I had found online,” Higdon says. She also helped connect Higdon with an experienced volunteer living with psoriatic disease through NPF’s Psoriasis One-to-One program.
The navigator suggested Higdon see a rheumatologist, which she didn’t know was an option. When she went to her PCP for a referral, her doctor shared her own autoimmune struggles and recommended her own rheumatologist. (Higdon was also referred to two dermatologists, but she found it more convenient to stay with her PCP, who is located much closer to her home and is very familiar with psoriasis.)
The rheumatologist found inflammation throughout Higdon’s body, including arthritis in her knees that Higdon was unaware of. The rheumatologist started her on a systemic and an oral immunosuppressant. The condition of her joints hasn’t changed much, but the drugs have cleared her skin.
Higdon and her new specialist are now discussing biologics, a conversation that began with her navigator.
“I’ve really learned a lot on this journey,” Higdon says. “I refuse to give up. I want to ski and hike like I used to. I want to teach my daughter how to do these things I used to do, like play basketball, softball and volleyball and not worry how much I’m going to hurt the next day.”
Her advice: Do your research and connect with others through NPF. “Figuring this out can be so frustrating, but I have found so many great people to get support from, especially when those around you cannot understand what you’re going through.”
|Read on: New hope for an old problem | National Psoriasis Foundation|
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