Even if you don’t know someone with psoriasis, you may have seen a person with signs of the disease. The red, scaly skin patches, small red dots, or pus-filled blisters can show up where it’s hard to hide them -- the elbows, the hands, even the face. It’s more than a cosmetic problem. People will stare, or snicker, or worse.
About 7.5 million people in the U.S. have psoriasis, and once it starts, usually between ages 15 and 35, it doesn’t really go away. So people have to learn how to deal with it in all parts of life, from clothing to romance to jobs.
As more people learn more about the disease, though, those who have it may face less stigma and misunderstanding about their condition. Here's what people with psoriasis would like the rest of us to know.
No, it's not contagious.
Skin cells live for about a month before they drop off your skin. With psoriasis, they die much faster, which means that dead ones pile up and flake off in droves.
That may be one reason why so many people think psoriasis is contagious. But it isn't.
"All those flakes I'm dropping are just dead skin cells," says Jeani Mills, 71, of Visalia, CA, who was diagnosed with psoriasis about 16 years ago. "They are messy, but they can't hurt you."
So how do you get the disease? About 10% of people carry a gene that could lead to it. But scientists think the cause is most likely a combination of genes and triggers in the environment, including stress, some medications, and infections.
Doctors are still trying to figure out the other reasons people get psoriasis, but they do know one thing: You cannot catch it from someone else.
It's not just a skin thing.
Although the condition is most obvious on the skin (including the scalp, where it can cause dandruff), it's not really a skin disease. It's an autoimmune disease, meaning a person’s immune system has turned against her body.
"[People think] this is a cosmetic issue similar to a burn or acne, and that is not at all true," says Alisha Bridges, 29, of Atlanta. "I can't emphasize this enough. It's my immune system going crazy."
Sometimes I feel isolated.
When Diane Talbert was diagnosed with psoriasis 53 years ago, she left her kindergarten class and spent 3 months quarantined in a stark hospital room while doctors tried to treat a disease they did not understand.
Since then, Talbert, of Waldorf, MD, says people have stared at her, ordered her out of swimming pools, and asked that she not serve them in restaurants.
Jennifer Pellegrin, a 33-year-old baker in Riverside, CA, once had a bride cancel her wedding cake order after she noticed Pellegrin's psoriasis plaques.
She says she has anxiety attacks when she's shopping because people stare at her. "I wish people knew the way that they look at us, the facial expressions. We're not blind. We see that," she says.
Talbert says that for her, connections with others who have the disease has been a real life saver. She blogs about her psoriasis and psoriatic arthritis for CreakyJoints, an online community for people who have different forms of arthritis. She also founded a nonprofit group focused on quality-of-life issues for people with psoriasis and often speaks publicly about the condition.
The result? A changed attitude about her life.
"The one thing I have learned in the past few years is talking to someone helps," Talbert wrote in one of her blogs. "There are things I have never spoken of in 50 years; just being able to blog has set off a light in my brain. This is part of my healing."
Some people benefit from counseling as well. There's even a new field of psychology dedicated to helping people with skin conditions: psychodermatology.
I deal with a lot that you don’t see.
Mills wears dark tights with dresses and sometimes gloves "so not to freak people out." For the first 40 years of her life, Talbert never wore short sleeves and never showed her legs.
Some people have psoriasis on their genitals, which makes it hard to have sex, start a relationship, or even walk.
Psoriasis can also hurt and leave you feeling drained. "Sometimes I swear I'm a 70-year-old woman having no motivation because my body aches so much," says Pellegrin, who has psoriatic arthritis, too.
"It can have as much impact on your lifestyle as diabetes," says Theresa Coyner, a nurse practitioner in Indiana who is on the board of directors of the Dermatology Nurses' Association.
Your cousin’s co-worker’s treatment may not work for me.
People with psoriasis often hear from friends and even strangers suggesting treatments or diets that worked for someone else with psoriasis. They may have good intentions, but Bridges says most of the time, the comments are just frustrating.
"Sometimes it is very disheartening -- people throwing out ideas when they don't have psoriasis themselves." she says. "What works for one person may not work for another person."
It may take patience to find the right therapies, but the good news is that there's probably something to help everyone.
"Within the past 10 years, the treatment options for psoriasis have skyrocketed," Coyner says.
"We have so many good options today, it is very likely you can persevere through to an option that works for you as long as you keep trying," Evans says.
There is hope.
Despite the frustrations of living with psoriasis, people with the condition still have hope: that awareness is rising and that there will be more treatments or even a cure.
"Back in the day nobody knew about psoriasis," Talbert says. "Now, over the years, more people get involved. I think there's a lot of hope. I think there will be a cure."