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.85 percent of U.S. participants with psoriasis have suffered from some kind of social stigma, including discrimination or humiliation, because of the condition.
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, 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.
Treatments
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.
“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.”“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.
