Psoriasis – Clearing Up Perceptions
When she was 14, Carmela Cavalieri thought she had acne. Four years later, when she saw the doctor for something else, she was asked how long she had had psoriasis. That’s when she discovered that what she had on her arms, legs, hips, knees, and legs – basically all over her body except for her face – was in fact not acne.
What Cavalieri had were red, scaly patches that became sores, then scabs, especially around bony areas. This describes psoriasis, an autoimmune disease that causes raised, red, scaly patches to appear on the skin.
A recent survey released by Novartis Pharmacueticals – the first to explore “perceptions of clear skin in psoriasis, included 8,300 people from 31 countries worldwide; 1,415 patients from the U.S. alone,” according to the press release – found that 85 percent of U.S. participants with psoriasis have suffered from some kind of social stigma, including discrimination or humiliation, because of the condition.
As if that wasn’t enough, 48 percent have been asked if they were contagious, 45 percent have been stared at in public, and 48 percent face more housework because of the condition, including cleaning up skin flakes or washing bloody or stained sheets. Over half of the respondents said that psoriasis has affected past or current relationships, 30 percent were diagnosed with depression at some point, while 27 percent had anxiety. Sadly, 52 percent of U.S. respondents don’t think completely clear skin is a realistic goal.
More about psoriasis
Psoriasis affects one to three percent of the U.S. population, says Dr. Whitney High, M.D., J.D., MEng, Director of Dermatopathology at the University of Colorado School of Medicine. In simplistic terms, Dr. High says, psoriasis is a genetic disease with an environmental trigger. The range of disease varies. And it is absolutely not contagious.
The National Psoriasis Foundation (NPF) says there’s no special blood tests or tools to diagnose the condition. A dermatologist or other health care provider usually just examines the affected skin. There are five types ranging from the kind Cavalieri has (the most common) to a severe form, called erythrodermic psoriasis, which leads to widespread fiery redness over most of the body causing skin to come off in sheets. This kind is rare, however.
Men and women are affected almost equally by psoriasis, but as with many diseases, women are more likely to seek care. Women may also be more concerned with their physical appearance and how it will affect plans to start a family.
The NPF says that psoriasis occurs in all racial groups, but at varying rates. It can develop at any age, but often occurs between the ages of 15 and 35. About 10-15 percent get it before age 10.
As a result of her psoriasis, Cavalieri has never worn shorts and usually wears long sleeved shirts. In high school, she wore dark nylons because they were acceptable to wear with Catholic uniforms. When a nun asked why she always wore dark stockings, she had to show her what she was hiding on her legs. Cavalieri became withdrawn, self-conscious, and even feared that she had leprosy.
Then when it came to her wedding night, Cavalieri was afraid to undress. She was scared to show her husband her condition, fearful of what he might do or say, whether he’d reject or even leave her. She never even told her four children until two of her sons were diagnosed with it.
Dr. Carolyn Jacob, MD, founder and medical director of Chicago Cosmetic Surgery and Dermatology, was diagnosed at 14 when she developed a rash on her scalp after a perm (“It was the 80s!” she explains.). Like Cavalieri, she found it miserable having psoriasis as a teenager because she had to put cream on her scalp and then a shower cap over it to bed. “I thought there was no chance I was ever going to get married because who would want to be with someone with a shower cap on their head every night?” She eventually developed other spots on her body, including her nails. To this day, she keeps her nails covered with polish.
The development of biologic medications has done wonders for people like Dr. Jacob. Biologic drugs or biologics, are protein-based drugs derived from living cells cultured in a laboratory that are given by injection or IV infusion, as described by NPF. Even though biologics have been used for decades, new techniques have made them more widely available. They target specific parts of the immune system.
Not only has this treatment completely cleared up Dr. Jacob’s psoriasis, but she also put her best friend on one for her skin, and she became clear for the first time since she was six years old.
“You have no idea the impact of a skin disease on your daily activities in terms of what you wear, whether not you might go to a swimming pool party, etc., and to not have to worry about the disease showing is absolutely wonderful,” says Dr. Jacob. “The other important part is that 30 percent of people with psoriasis will develop psoriatic arthritis, which can be debilitating. It can literally take away the use of your hands if you have it bad enough. The biologics currently prevent that from happening.”
Other treatments include topical steroids, light therapy, and oral immunosuppressive drugs, says Dr. High. She cautions that treatments must be adjusted to the disease. She wouldn’t prescribe a dangerous, costly immunosuppressive treatment for someone who just has a “little scaling” and isn’t particularly concerned.
The new biologic therapies are a major step forward, Dr. High says, because many of them can be given episodically (every few weeks to months) and target specific pathways. He anticipates continued growth in this area.
What should be done
Health insurance is often an obstacle to recovery. Dr. Jacob’s best friend Mindy Brennan says that her current medication, the biologic Humira, works great and clears up 99 percent of her plaques. The biggest drawback is getting it covered by her insurance. At $3,000 a month, it’s too costly.
Dr. Jacob agrees. “Insurance doesn’t seem to care that it’s a systemic disease, not just a skin disease, which needs to be controlled (like diabetes or high blood pressure). Patching it with topical creams for moderate to severe disease is about as antiquated as blood letting with leeches. It’s not getting at the root cause of the disease.”
Another huge issue is educating the public about psoriasis and that it’s treatable. Brennan was not surprised at the results of the study, and says she absolutely believes that people are stared at and looked at differently when they suffer from large psoriasis outbreaks. Her 14-year-old son has it, and he’s made fun of because of his breakouts or scalp flakes on his clothes.
U.S. dermatologists can help, Dr. High says, by encouraging people to seek the expert care dermatologists are eager to provide, treating psoriasis using a variety of modalities, and educating the public that it’s not an infectious disease that doesn’t warrant precautions and shouldn’t affect social interactions.
The rise in ads and television commercials hasn’t gone unnoticed by people who have psoriasis; they think there should be more and that more effort should be made to reach people.
Cavalieri would like people to know that psoriasis exists, that it’s neither contagious nor cancerous. “Psoriasis is nothing to be ashamed of and it could affect anyone,” she says.