Psoriasis is a long-term skin disease that causes scaling and inflammation. It affects more than 5 million Americans, mostly adults. It affects both men and women about equally.
"Know as much as you can about psoriasis..."
Psoriasis first flared into Kristin Donahue's life as an angry, inflamed scale on her elbow when she was five years old. It progressed through elementary school, most prominently on her eyelids, knees and elbows. By middle school, it had spread to her scalp.
"Fortunately, I grew up in a small town in Oregon where everyone knew and accepted me," recalls Donahue, now 31, and a freelance writer.
Surrounded by a loving family and understanding friends, she thrived emotionally and socially, swam freestyle on her high school swim team and never let psoriasis hold her back.
"But psoriasis can be very isolating," she says. "It's shaped me, made me a good judge of character." She credits her knack for finding people able to look beyond her physical condition with helping sustain her.
"Psoriasis is very difficult to talk about but when I do, then it's up to the other person to decide about me," she observes.
Recognizing that everyone feels insecure about something, she's found that it's easiest to break the ice in small group settings. "You feel insulated enough to talk about it. But above all," she advises, "hold on to those who love and support you; your family and friends."
As for treating psoriasis, she urges people to learn as much as possible, to not give in to the disease and to be their own best advocates. "There are ways to manage," she says. Except for a brief period in grade school, when ultraviolet light treatments cleared her legs, Donahue continues to suffer periods of intense, painful flares.
"I live with the disease," she says, cautious about being treated with narrow band ultraviolet light (UVB) for relief. Due to years of prior such treatment, she's had two basal cell carcinoma cancers removed and remains at high risk for more skin cancer. She gets a complete skin check every six months.
To learn more and perhaps better manage her condition, last year she joined a clinical research study at the National Institutes of Health Clinical Center, in Bethesda, Maryland, conducted by Dr. Nehal N. Mehta, a cardiologist at the National Heart, Lung, and Blood Institute. The four-year study will enroll as many as 1,200 psoriasis patients.
Mehta and colleagues are testing how chronic inflammation, such as that seen in psoriasis, is associated with cardiovascular disease, diabetes, and obesity. "We are looking beyond psoriasis as a cosmetic disease, at all its potential effects," says Mehta. "Our participants are highly self-motivated. As we learn more, so do they, and that's the benefit.
" Although she maintains a healthy diet and exercises regularly and would not normally be considered "at risk" for developing heart disease or diabetes, Donahue can't be sure and admits to having down days.
"But that's normal for everyone," she says.