Ed Dewke learned he had a skin disease while sitting in a barber's chair.
When Dewke asked his barber about a particularly awful case of dandruff, the barber told him, "Oh, it looks like psoriasis to me." And he was right.
The following year, after another very noticeable flare-upa lesion at the tip of his noseDewke, 57, a telecommunications consultant from Midway, Ky., finally went to a doctor for a proper diagnosis.
Psoriasis, a painful skin condition that affects some seven million Americans, can be diagnosed by a clinical exam and a few questions from your primary care doctor or a dermatologist. But since the condition, which can cause disfiguring skin lesions (sometimes known as plaques), can be very embarrassing, many people don't seek out the care they need. This is unfortunate, because treatments for psoriasis can be quite effective.
To get the best care and the right treatment, patients should find a primary care physician or dermatologist who has experience treating the disease and is up-to-date on the latest treatments.
Find a committed doctor whose style fits yours
One of the most important steps you can take is to find a health-care provider who is proactive about treating psoriasis. "If you go to somebody for the first time and the [doctor] doesnt seem interested in the psoriasis, my advice is find another one," says Michael Zanolli, MD, an associate clinical professor of medicine at the Vanderbilt University School of Medicine in Nashville, Tenn.
"Find a doctor you can work with, because this disease is life-long," adds Victoria Gardner Nye, 35, who has battled psoriasis since she was a teenager.
The National Psoriasis Foundation (NPF) maintains an online directory of doctors who regularly treat psoriasis, as does the American Academy of Dermatology. And if a patient isnt sure whether a prospective doctor treats many others with the disease, Dewke, who runs a website called Flake HQ, suggests simply calling the office staff to ask.
Clinics that offer a broader, team-based approach to treating psoriasis are also beginning to emerge, says dermatologist Andrew Blauvelt, MD, a professor at Oregon Health & Science University in Portland and the research director of the universitys Center of Excellence for Psoriasis and Psoriatic Arthritis, which combines the efforts of dermatologists, rheumatologists, and psychiatrists.
Explain how psoriasis affects your life
To create an initial treatment plan, a doctor will gauge the severity of your psoriasis based, in part, on the percentage of your body it covers and where the lesions are located. Although the textbook definition of "severe" psoriasis is a case that affects more than 10% of the body, psoriasis can also be considered severe if only, say, the hands or genitals are affected, since it can cause major problems in those areas.
Lesions anywhere on the body that derail an individuals daily life or livelihood call for aggressive treatment. Explaining to the provider how your psoriasis affects you and how it affects your quality of life is very important, so it can be factored into the treatment plan, says Lakshi Aldredge, a dermatology nurse practitioner at the Portland VA Medical Center, in Portland, Ore.
Similarly, patients need to let the provider know if they have joint pain, swelling, or changes in their fingernails or toenails. These could be signs of psoriatic arthritis, which effects up to 30% of psoriasis sufferers and can be eased and possibly slowed with early treatment from a rheumatologist.
Research before you go
People with psoriasis can help themselves in the doctors office by describing their own symptoms in detail, by informing themselves beforehand about how the disease acts and the available classes of treatments, and by taking a proactive role in their own disease management.
Aldredge suggests that patients take a few minutes to jot down a brief history of their treatmentwhen the psoriasis began, how its progressed, what treatments (including over-the-counter remedies) they have tried in the past or are currently takingbefore seeing a doctor. Patients should also note whether they have other medical conditions.
"You need to be your own best advocate," says Gardner Nye. "Go in with as much information as you can."
Be creative to get treatments covered
That advocacy can also extend to petitioning an insurance company for coverage of a treatment and finding discount programs that can ease access to medications. Details on so-called patient assistance programs can often be found on drug manufacturers websites, and the NPF also keeps a resource page with links to other groups that can help.
Taking part in a clinical trial can be another way for patients without health insurance to get temporary access to free treatments, says Dr. Blauvelt, or an opportunity for those not finding psoriasis relief elsewhere to try something new.
Armed with information and initiative, patients can play an active and important role in the treatment process. For Dr. Zanolli, it takes at least two visits with new patientsto make sure they understand the disease and treatment options, and to allow them to return with questionsbefore he can forge a plan. Dr. Zanolli says he's looking for a partner, for patients to "take responsibility for their disease and their treatment."