“That's a bad rash. I’ve got a great moisturizer I can recommend.”
For the more than 7.5 million Americans living with psoriasis, this kind of comment is all too familiar. And while it may be well-meaning, it's often misguided.
The truth is that most people don’t really understand psoriasis, despite its prevalence. In fact, what may seem like a simple, if at times unsightly, skin problem is actually a serious autoimmune disease.
Most typically, psoriasis appears as a scaly red rash on the elbows, knees and scalp, but it can crop up anywhere on the body. And it can show up in several other forms, including a red, dotlike rash, as well as fiery crimson-colored lesions in the folds of the skin.
We asked four people with the condition, including Scandal actress Katie Lowes, what they wished others knew about psoriasis—truths they want the world to know.
Unfortunately, this fact doesn’t prevent people living with the condition from feeling like pariahs on occasion.
“The scales are embarrassing and noticeable, so when you walk around in public, people will often stare and judge—and sometimes even back away, thinking they can get it from you,” says Todd Bello, 54, a retired postal worker living in Bayside, New York, who was diagnosed with the condition at 28.
But there’s no need to back away: You can’t catch psoriasis from another person. The disease can be hereditary, and in certain people, it can also be triggered by injury to the skin, certain medications, infection—even stress.
Houston-based marketing consultant Sabrina Skiles, 33, says that her mother had psoriasis, “but even so, when I was first diagnosed at 15, I would hide behind clothes.”
That changed when she met her husband. “I wanted him to know who I was, so I showed him my spots, and explained that psoriasis was genetic and an autoimmune disease.”
Although shame still sometimes creeps up on her, being open about the condition helps her—and most patients—power through. “The more I talk about how I’m feeling,” she says, “the more confident and less ashamed I feel.”
“My co-workers called me Pecorino because I left a trail of flakes from my hair, moustache and skin everywhere I went, like grated cheese,” Bello recalls, adding that they assumed he had dandruff.
Skiles has also worried that clients think she has dandruff when she is having a flare-up. “I have wondered if they could see the flakes on my chair or my jacket,” she says.
And that isn't the only misperception she has faced.
“The first thing people often say when I tell them I have psoriasis is, ‘That’s like eczema, right?’ ” says Skiles, who is a volunteer and mentor for the National Psoriasis Foundation (NPF). “But it’s not something an ordinary lotion can fix.”
Indeed, topical treatments, like steroid creams to target inflammation, are usually the first line of defense against the condition; people with moderate or severe cases of psoriasis may require more advanced medications to treat the disease, depending on how they respond and their doctor's guidance.
“People don’t realize this disease affects a person’s whole life,” says Lowes, 35. “You might cancel dates, avoid family events or decide not to go on vacation because of what’s going on with your skin. It can make you want to crawl inside yourself and hide.”
Case in point: When Lowes got engaged to fellow actor Adam Shapiro, she’d planned to have photos taken for the couple’s "save the date" cards. Then she had a horrible flare-up, and wound up canceling the photo session.
“I was having meltdowns in my closet," she recalls. "I couldn’t find an outfit that would cover the back of my neck, and all I wanted was to wear a ponytail.”
I was diagnosed right at the beginning of Scandal. It was my big break, and with the pressure of being in the spotlight, plus getting engaged, it was no coincidence I had massive flare-ups.
Lowes also found, as many patients do, that stress exacerbated her symptoms.
“I was diagnosed right at the beginning of Scandal,” she says. “It was my big break, and with the pressure of being in the spotlight, plus getting engaged, it was no coincidence I had massive flare-ups.”
Lori-Ann Holbrook, 49, has experienced the stress-psoriasis connection, too. “I’d have a confrontation at work, and get a flare-up within the hour,” she says.
In fact, simply being diagnosed with the disease was mentally challenging, recalls the City Girl Flare blogger and NPF mentor, who lives in Dallas.
"I was petrified," Holbrook says. "I went on the internet to look at pictures of psoriasis, and I really scared myself. I thought: I'm going to be red from head to toe; I'm going to look like I'm on fire. People are going to be afraid of me. I really panicked about what the future meant for me."
Perhaps it's no surprise, then, that psoriasis has also been linked with depression: As many as 50% of patients with the condition have the mood disorder—Bello included.
“In the beginning, I was so depressed that I couldn’t even talk about it,” Bello says. But with counseling, he’s now challenging himself to be more open about the disease—and help others as a volunteer and mentor for the NPF.
“Hearing people’s stories helps me cope and see things from a different perspective,” he says.
Lowes no longer cancels photo sessions due to flare-ups; for the most part, medication helps keep her symptoms at bay.
“If you want to look good in a bikini on vacation, speak up and work with your doc to find a treatment that is right for you,” she says. “If you keep trying, it is possible to get your symptoms under control.”
In addition to steroid creams and light therapy, there are now oral, injectable and intravenous medications that can help prevent inflammation and the growth of excess skin cells. Exercise, too, is crucial for people with psoriasis, along with stress-relieving activities like yoga or meditation.
“Unlike years ago, if my children get it, they will be in a better situation because of medication,” Bello says. “I’m happy about that.”