For further information:
Jessica J. Wise, ext. 22
Tara Rolstad, ext. 19
1.800.723.9166, fax: 1.503.245.0626
e-mail: [email protected]
For Immediate Release
LIVING WITH PSORIASIS A CHALLENGE TO ONE IN FIVE AMERICANS National Psoriasis Foundation Offers Help to Those with this Skin Disease
PORTLAND, ORE, December 31, 1997 -- For two years, Priscilla Kurz ignored the funny little patch of dried skin on her elbow, assuming it wasn't anything more than a minor irritation.
But just days before the 20-year-old college student was scheduled to board a plane for Athens, Greece, where she had arranged to study for the year, she started breaking out uncontrollably. Panicked, she ran to a dermatologist, who examined the rash carefully, including the patch on her elbow.
"He knew right away that it was psoriasis," recalls Kurz, now 52. "But he couldn't tell me what caused it and said there was no cure -- only a variety of medications to try to control it."
Psoriasis affects approximately two percent of the world's population -- 6.4 million people in the United States alone -- and strikes males and females equally. Its severity ranges from a small blemished fraction of skin surface area to total body disfigurement. Most sufferers develop initial lesions as young adults, but the disease may also appear for the first time in infants or the elderly.
It has been said that psoriasis does not take lives; it ruins them. Sufferers experience itching, burning, stinging, and bleeding of the skin. In severe cases involving hands, feet and nails, it can become difficult to enjoy and even perform everyday activities.
But it is the psychological strain that causes the most anguish for victims. On a regular basis, they must face the unpredictability of their appearance, the awkwardness of leaving a trail of flakes of skin wherever they go, and the embarrassment of strangers staring and whispering. They often try to hide their skin under clothes or make-up. Constant itching can make them irritable and nervous.
To help address their struggles, many sufferers have turned to the National Psoriasis Foundation (NPF) for support. Founded in 1968, the nonprofit organization's primary mission is to educate the public and support psoriasis research. It does so by publishing the most current information on psoriasis; providing a forum for those with psoriasis to speak out; funding dollars for psoriasis research; and establishing an alliance between people with psoriasis, the scientific community, the medical community, and the pharmaceutical industry.
For the past seven years, Kurz has served as a NPF Network group leader for the metropolitan St. Louis area. She organizes educational meetings for the 100-member network -- including a presentation each year by a dermatologist who identifies new treatments in the marketplace and those on the horizon --and focuses on fund raising through membership.
"There is strength in numbers. I've become stronger in dealing with this disease over the years because of support from people who have the same problems I do," explains Kurz.
Kurz has also become wiser about managing psoriasis. Years ago she learned that for her, allergies can result in an outbreak and started visiting an allergist regularly for shots. It's helped tremendously, she says. When she realized that the stress of managing her illness, working as a full-time writer and editor, and raising a handicapped daughter (her daughter, now 21, has been deaf since childhood) worsened her condition, she modified her lifestyle to work only part time.
Treating Psoriasis
The aim of psoriasis treatment is to clear the skin of the lesions for the longest period of time. There is a wide range of treatments available, generally divided into three categories: topical agents (medications rubbed onto the psoriasis lesions); phototherapy (ultraviolet light); and internal medications (pills and injections). Generally, treatment choices involve a 1-2-3 approach. If topical agents are tried and prove to be ineffective, phototherapy is recommended. Internal medications are the third choice and are often used for more extensive and difficult forms of psoriasis.
In recent months several new medications have been approved by the US Food and Drug Administration for the treatment of psoriasis. Tazorac, a topical medication is now available to treat mild-to-moderate psoriasis. Soriatane, an oral medication that is effective in treating severe psoriasis will be available via prescription in mid-October. Another oral medication for severe psoriasis, Neoral, is expected to be available by late this year.
Because the drugs used to treat psoriasis can pose a risk of detrimental side effects, doctors will often use different therapies in combination or rotation with others to minimize exposure to any one treatment. According to Alan Menter, M.D., medical director of the Baylor Psoriasis Center, Dallas, Texas, rotating or combining therapies can help clear a patient's symptoms with improved safety and reduced expense.
"I have many severe psoriasis patients taking systemic therapies to get symptoms under control," explained Dr. Menter. "I find it effective to combine different types of treatment to get the best results.
"For example, I might prescribe Soriatane and ultraviolet light therapy, but in lower doses of each. That way, the risk of melanoma associated with light therapy is reduced, as is the risk of side effects such as hair loss from Soriatane."
Rotational therapy is slightly different in that therapies are prescribed for a certain time period, and then exchanged for others.
"Cyclosporine is effective in treating psoriasis symptoms, but it is associated with kidney problems," described Dr. Menter. "For some patients, the answer might be to prescribe a year-long course of cyclosporine, and then exchange that drug for another. The ultimate result is minimizing the cumulative toxicity of any given treatment."
The sad news for psoriasis sufferers is that there is no absolute cure for the disease, only treatments that offer relief of symptoms. Fortunately there are some relatively simple steps most psoriasis sufferers can take to help their condition.
Things to Do Today: Sunbathe
Sun-worshipping was never high on Mark Hirsch's priority list. But after nine years of varied psoriasis therapies -- from hours in front of a light box to pills to ointments to drinking fish oil every day -- and complications from all of them, he decided to give it a shot. The result? It's proven to be the best remedy yet for him to control the disease.
"I've spent three days a week all summer sitting by the swimming pool," says Hirsch. "My psoriasis is in great shape."
Keeping his stress level down also helps Hirsch keep his psoriasis under control. Several times a week he runs, lifts weights, bicycles, and plays soccer. These vigorous workouts, coupled with his involvement in the Dallas Network group of NPF, give him the outlet he needs to remain positive.
"Two years ago, I couldn't talk to people about psoriasis," admits the 34-year-old. "Then we started our support group. Everyone with psoriasis has had positive and negative experiences. Once I put my arm in a bag of potato chips and everyone looked at me as if to say, 'Are flakes of skin going into the bag?' Now I can talk about the disease and work at dealing with it."
One of Hirsch's concerns is how psoriatic arthritis -- which he expects to develop in the future -- will affect his work. As a member of Lucent Technologies' technical team responsible for developing software that monitors and controls telephone systems, his livelihood depends on typing on a computer keyboard. For the time being, though, he remains optimistic. In the last year, he points out, three researchers identified genes that relate to psoriasis. In the past 10 years, more drug therapies have been developed than in the previous 100 years.
"I'm not going to let it get to me," assures Hirsch.
A Family's Battle
Ned Day considers himself lucky.
Although he's wrestled with psoriasis for 40 years and has psoriatic arthritis, his illness hasn't been debilitating.
"It's been annoying and inconvenient," says the 67-year-old. "I could never wear shorts or short-sleeve shirts in the summertime. And because of this arthritis I have a somewhat deformed right hand and general stiffness in my body. But I retired from education at age 55 as a school principal, with 32 years of service. For the past seven years I've worked part-time at a Jewish Community Center's day care facility."
Still, Day is disappointed and a little angry about the disease. The reason: despite the fact there was only a 10 to 25 percent chance of his psoriasis being genetically passed on to his children, by age 17 both of his sons -- now 38 and 40 -- developed it.
"They have it much more extensively that I do, although it hasn't affected their abilities to have careers, either," says Day. "One earned a master's degree in aviation and the other earned a master's degree in divinity and is a minister.
"But I worry about my three granddaughters. Every time one of them gets a rash, the whole family worries. And one is 15 years old, only a year or two younger than when her father came down with psoriasis."
One of Day's concerns in the past few years has been insurance. When he turned 65 and switched to Medicare, he purchased supplemental insurance. But then he learned that the policy wouldn't cover the PUVA treatments he had been receiving from Karen Forsman, M.D., at Washington University's School of Medicine. So he stopped seeing his doctor. For the past two years he's self-administered treatments, using a variety of emollients.
"I had pretty good success until eight or 10 months ago," admits Day. "Recently, I went back to Dr. Forsman and she recommended further treatment. In a few weeks I'll see a new doctor at St. Louis University's medical clinic and, hopefully, my insurance will cover the treatment he recommends."
Day's biggest hope, however, is that some day researchers will discover a cure for psoriasis -- a dream shared by millions of others around the world.
For more information on psoriasis, its symptoms, and treatment options, the National Psoriasis Foundation operates a toll-free information line at 1-800-723-9166. # # #
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