Whether you are newly diagnosed, have lived with the disease for a long time, or know somebody who has, there are great resources to help you educate yourself about the disease, connect with others, afford health care, fight against stigma, and discover the latest research.

Education
One common misperception about psoriasis, says Nicora Gardner, health education manager at the National Psoriasis Foundation, is that it’s merely a skin disease. “It’s a systemic disease of the immune system that can affect more than your skin,” she says. Psoriasis can increase your risk for “heart disease, depression, obesity, and diabetes,” says Gardner, which is why she says it’s important to educate yourself about the disease and the treatment options.

• The National Psoriasis Foundation. The website of the country’s leading psoriasis education and advocacy group is the mother lode for information about psoriasis and psoriatic arthritis. Learn about the types of psoriasis, treatment options, advocacy opportunities, locating a doctor, resources for managing the disease, and ways to navigate your health care options.

• PsoriasisNet. This site from the American Academy of Dermatology covers everything you need to know about psoriasis and includes sections on causes, treatments, triggers, minimizing flare-ups, and finding a dermatologist in your area.

Support
Because it is a visible and chronic illness, psoriasis affects more than how you feel physically. “The mental-health aspect is huge,” says Gardner. “It’s easy to become isolated and depressed. Building a support team beyond your physicians is invaluable. It helps with self-esteem and isolation, and provides a feeling of acceptance for people who have a very visible disease.”

• National Psoriasis Foundation. The foundation hosts a very active online portal with message boards, online chats, and information about live events and support groups in your area. You can also check out the foundation on Facebook.

• WeArePsoriasis.org.
  Share photos and treatment experiences, join communities based on mutual interests, and connect with people around the world at this active social-networking site for people living with psoriasis.

• Psoriasis Patients.
  People with psoriasis share tips, treatment advice, and feelings about living with the disease on this social-networking site, which also includes blogs and information about upcoming events.

Affording health care
Navigating the confusing world of health care can be a challenge, which is why the National Psoriasis Foundation offers several resources to help make the process smoother. Download the foundation’s Access Action Guide, in which the insured can learn how to decipher their health plan and the uninsured can find out how to get low-cost or free care. On the foundation’s website you can also learn about financial aid and patient assistance programs for purchasing medications, how to appeal a denied claim, and how to choose a health plan.

Research
There is hope for the millions of people living with psoriasis in the United States. New medications, treatments, and studies are shedding light on this chronic disease. Visit these websites to stay up to date on the latest research and to find out about clinical trials:

• The Murdough Family Center for Psoriasis.
  Find out about cutting-edge news, research, and clinical trials on the website of this innovative research and clinical center, based at Case Western Reserve University in Cleveland.

• Journal of the American Academy of Dermatology.
  Type “psoriasis” into the search box to find thousands of studies about psoriasis. (Full-text access to some articles may require a subscription or fee.)

• Journal of Investigative Dermatology.
  Read the latest news, sign up for email alerts, and search the archives and current issues of this journal, which publishes research on biology and skin disease.

Educate Others
“After people have gone through the information-gathering phase, the most empowering thing people can do to fight the stigma is to do something about changing the stigma and changing the public perception of psoriasis,” says Gardner.

Visit the National Psoriasis Foundation’s “Act” section to find events you can join, including the Walk for Awareness, the foundation’s annual Capitol Hill Day, educational events around the country, the foundation’s national conference, and Psoriasis Awareness Month each August.

Phototherapy is the original psoriasis treatment. For as long as people have had the disease, they’ve treated it with sunlight. Even today, with all the high-tech remedies available, light therapy continues to be one of the most effective treatments for psoriasis, an autoimmune disorder that causes skin cells to grow too rapidly, resulting in red, itchy lesions on the surface of the skin.

“When ultraviolet light hits skin, it does all kinds of things,” says Steven Feldman, MD, PhD, a professor of dermatology at the Wake Forest University School of Medicine in Winston-Salem, N.C. Ultraviolet light kills the immune cells in the skin that contribute to psoriasis, and research suggests that UV light may also disrupt the faulty signals between immune cells and skin cells that lead to psoriasis lesions.

With relatively few side effects, phototherapy is an effective—yet underused—treatment, experts say. “Phototherapy is a great treatment to start with,” recommends Kathy Kavlick, RN, community outreach nurse for the Murdough Family Center for Psoriasis in Cleveland. “Some people get really good results from it.”

Types of phototherapy
Phototherapy is usually administered on an outpatient basis in a dermatologist’s office two to three times a week, using a walk-in light booth that looks like a tanning bed stood on end. Light boxes for home use are also available.

There are two main types of phototherapy:

• Ultraviolet B light (UVB), one of the components of sunlight, is especially effective for treating psoriasis. During the treatment patients are exposed to the light for just a few seconds at first, and the exposure time is gradually increased to several minutes per treatment. UVB treatment is sometimes administered with topical treatments such as coal tar, anthralin, or just mineral oil. A form of UVB light known as narrow-band (NB-UVB) has been shown to be even more effective than UVB, and is increasingly being used by dermatologists.

• Although not as potent as UVB, ultraviolet A light (UVA) is also used to treat psoriasis. UVA treatment generally takes longer than UVB—exposure times can reach 15 to 20 minutes—but at these higher doses it is also effective in clearing lesions. UVA light is often combined with an oral medication known as psoralen (a treatment known as PUVA).

A newer variation of phototherapy uses excimer or pulsed-dye lasers to target individual plaques. Research suggests that laser therapy may require fewer treatments and produce longer remissions, but since this technique is so focused it is not very practical for people with widespread lesions. As Dr. Feldman notes, however, roughly eight out of 10 people with psoriasis have lesions only in small, isolated spots, and laser therapy may grow more popular as the technology becomes faster and more effective.

What works best
Patients generally require about 20 phototherapy sessions before they see an improvement in their skin. Although response rates vary, studies suggest that 65% of the patients who receive UVB treatment and 75% of the patients who receive NB-UVB will experience significant skin clearance. Although UVB treatments are more widely used, PUVA may actually be more effective.

In a 2006 study in the Archives of Dermatology that compared PUVA and NB-UVB therapy in patients with chronic plaque psoriasis, the patients who underwent PUVA therapy had a significantly higher clearance rate (84%) than those who received NB-UVB (65%). The former group also required fewer treatment sessions, and the effects lasted longer.

PUVA does have some potentially serious side effects, however. Nearly one-third of patients experience nausea after treatment—and, more important, PUVA carries a long-term risk of skin cancer, especially in patients with fair skin.

The psoralen molecule used in PUVA is believed to be largely responsible for the increased risk. Psoralen, which is ingested orally or applied topically, enters the body’s cells and, when activated by UV light, changes their DNA. This process kills off immune cells close to the skin and helps control psoriasis, but it also leads to collateral damage that can cause skin cancer in the long run.

Because of the risk of skin cancer, PUVA is typically reserved for the most severe and stubborn psoriasis cases. “PUVA is a very, very effective treatment,” says Dr. Feldman. “It’s at least as effective as narrowband UVB, but it causes an increased risk of skin cancer, so we tend to avoid using it.”

UVB light is known to cause skin cancer as well, but studies have not shown any increased risk of skin cancer among psoriasis patients who have undergone UVB phototherapy.

If it’s so effective, why isn’t phototherapy used more?
Although phototherapy is considered a first-line treatment for psoriasis, patients and dermatologists alike report that it is often impractical.

Convenience is a factor, since patients need to visit their doctor’s office several times a week during business hours. But it can also be expensive; for each treatment, most insurance companies charge an office-visit co-pay, which tends to be higher than drug co-pays.

Nikki Woistman, 21, of St. Petersburg, Fla., considered phototherapy several years ago when psoriasis covered about 30% of her body. She was surprised to learn, however, that phototherapy would actually be more expensive than the new generation of biologic medications.

“Phototherapy was going to be $30 to $45 three times a week—and that adds up,” she says. “And it was a 30- to 45-minute ride [to get there], which didn’t really work with my schedule.” Woistman was interested in a home unit, but insurance didn’t cover it and her family couldn’t afford to pay out of pocket (some units cost several thousand dollars).

“Some dermatologists say phototherapy is threatened,” says Sheila Rittenberg, senior director of advocacy and external affairs for the National Psoriasis Foundation. “They can’t keep the equipment up if patients aren’t using it, and some patients are being bumped up to more expensive treatments.”

Tanning beds
Many psoriasis patients use commercial tanning beds to manage their lesions, and the anecdotal evidence suggests that they can be effective. Tanning beds emit both UVA and UVB light, and the percentage of UVB varies widely by machine, from less than 1% to nearly 10%. Whatever benefit patients experience likely comes from the UVB.

Many dermatologists believe that tanning beds are ineffective and potentially risky, since excessive use can cause skin damage and an increased risk of cancer. But if used responsibly, Dr. Feldman says, commercial tanning centers may be a “reasonable alternative” to phototherapy for patients without easy access to affordable office- or home-based treatments. (Consult a dermatologist before starting a tanning regimen, and review this list of precautions from the National Psoriasis Foundation.)

Good old sun
As people have known for thousands of years, natural sunlight is an effective treatment for psoriasis, although the effects may take several weeks to materialize. To avoid sunburn and overexposure, the National Psoriasis Foundation recommends multiple short sunbathing sessions. (Sunburns can actually exacerbate psoriasis.) Psoriasis patients should use sunscreen of SPF 15 or more on the parts of their bodies that aren’t affected by lesions, reapplying frequently.