Editor's note: This story was updated on 06/17/2020. NPF has released a statement regarding the current racial injustice in the U.S.
When Brenda Kong was diagnosed with psoriasis in 1993, her family had been in the U.S. about 11 years. “My parents spoke limited English, and there isn’t a word in our language for psoriasis,” says Kong, who was born in Cambodia and whose parents spoke Khmer. “They didn’t understand what it was, and for a long time, they couldn’t understand why Western doctors couldn’t heal me.”
Kong, now 37, was diagnosed with psoriasis at 13 and psoriatic arthritis at 22. As an active young athlete, she tried to hide her skin by wearing long socks when she played volleyball and tennis, but her condition was difficult to conceal. Her parents’ friends offered unsolicited advice about which foods to cut from her diet and which herbal teas to drink. They’d ask embarrassing questions and lift her sleeves to examine her skin. “They were trying to help, but when you’re a teenager, you’re sensitive to everything,” says Kong, who lives in Oakland, California.
Delores Teddleton also tried hard to conceal her psoriasis. Now 53, Teddleton remembers feeling lonely and embarrassed after her diagnosis. As a black woman, she didn’t know any other people of color with the disease. “You feel like you’re the only one,” she says. “I didn’t think anybody would understand; that’s why I never talked about it and always tried to hide it.”
Millions of people can relate to their experiences. Psoriasis is a common immune-mediated disease that touches skin of every color, but minorities face unique challenges — both physically and psychologically — related to the disease. By understanding how it may affect them differently than it does Caucasians, people of color can become better equipped to manage their disease.
Different Shades of Psoriasis
When Teddleton began breaking out with small bumps on her arms and elbows, the doctor on the Army base where she worked thought it was a reaction to the solvents and other chemicals she used to preserve vehicle parts in her job. He gave her a cream and reassigned her. But the bumps kept getting worse. Teddleton’s primary care physician conducted allergy tests and gave her more creams and antibiotics. Nothing helped. By then, her skin was inflamed from her scalp to her feet, even inside her mouth.
Severe pain and itching eventually landed her in the emergency room. Finally, after blood work and a biopsy, a dermatologist diagnosed her psoriasis at age 21. “I suffered a lot of years with it. All [doctors] would give me were creams, and it would get worse,” says Teddleton, who lives in Long Beach, Mississippi. “It was probably because they hadn’t seen people of color with psoriasis before. When I got on the computer to research it, I never saw people of color with it. It was always pictures of Caucasians.”
Psoriasis presents differently in skin of color, which can make it difficult to diagnose. On Caucasian skin, psoriasis typically appears with erythema, or red scaly plaques, but on skin of color, the discoloration is darker and thicker. “Rather than being classically red, psoriasis in darker skin types can present as more of a purple or grayish color or darker brown,” says Junko Takeshita, M.D., Ph.D., an assistant professor of dermatology and epidemiology at the University of Pennsylvania Perelman School of Medicine. “For this reason, it can be misdiagnosed or undiagnosed more frequently among non-whites.”
Psoriasis is often more severe on skin of color. In 2011, the Journal of Drugs in Dermatology published a study of racial and ethnic variations among 2,511 psoriasis patients and found that Asians had the highest percentage of body surface area (BSA) affected at 41 percent, and Caucasians had the lowest at 28 percent.
Getting an early diagnosis is an important first hurdle. It may take seeing as many as six dermatologists before a person of color gets the correct diagnosis. The sooner that happens, the sooner individuals can find effective treatments.
“Those patients potentially miss out on therapies that could be valuable in helping control their disease, because they are not diagnosed appropriately,” says Amy J. McMichael, M.D., professor and chair of the dermatology department at Wake Forest School of Medicine in Winston-Salem, North Carolina, and a past president of the Skin of Color Society. “A lot of patients with skin of color happen to be uninsured or underinsured. This is a population where we probably miss a tremendous number of patients because they don’t even come in.”
Takeshita recently evaluated health care utilization for psoriasis by race in the U.S. Her research was published in the January 2018 issue of the Journal of the American Academy of Dermatology. The study found that non-Hispanic racial minorities, including blacks, Asians and Native Americans, are 40 percent less likely to see a dermatologist for their psoriasis than non-Hispanic whites, regardless of their health insurance or socioeconomic status. That translates to more than 3 million fewer outpatient visits for non-Hispanic racial minorities with psoriasis, compared with non-Hispanic whites.
“These findings are particularly notable in light of data that suggest black individuals with psoriasis may have more severe disease, and minorities report poorer quality of life due to psoriasis than whites, independent of disease severity,” Takeshita says. “Therefore, minorities may have greater disease burden, yet have lower heath care utilization for their psoriasis which, in turn, may explain the greater disease burden.”
Spectrum of Treatment Options
Although psoriasis presents differently on various skin types, color doesn’t necessarily determine treatment options. Patients should consult with their health care providers to personalize their treatment plans. Creams, ointments and topical steroids are typically the first line of defense against psoriasis, while more severe cases require more aggressive therapies.
“When people of color present with psoriasis, especially African-American patients, they often have more hyperkeratotic, or thicker-scaled lesions,” says McMichael. “That means the lesions are going to take a longer time to control, with medication at higher potency levels.”
If creams don’t help, phototherapy can be very effective for people with darker skin pigment, she says, noting the lack of research on treatment for skin of color, as most studies predominantly feature white patients. That situation is changing, however. In 2017, the Patient-Centered Outcomes Research Institute (PCORI) awarded an $8.6 million contract to one of Takeshita’s colleagues, Joel Gelfand, M.D., a board-certified dermatologist whose clinical work focuses on general dermatology and psoriasis. The PCORI contract is for a clinical trial called LITE. The purpose of LITE is to study the effectiveness and safety of 12 weeks of home-based versus office-based phototherapy for the treatment of psoriasis, and the effects of phototherapy across skin tones.
LITE, which began in 2019 and is scheduled to end in 2023, will involve a controlled study of approximately 1,000 patients age 12 and older, under real-world conditions – either at home or at their health care provider’s office.
For Aimee Perez, a 30-year-old Mexican-American, light therapy has been the most effective treatment at clearing her dark skin, which is typically 70 to 80 percent covered with plaques. Since she was diagnosed with psoriasis at age 17 and psoriatic arthritis at 22, she has tried a variety of systemic therapies, biologics and other medications to find the best treatment for her skin and joints.
“It’s a 24/7 job to have psoriasis,” Perez says. “Once you find a treatment that works, psoriasis finds a way to survive, so you’re constantly battling it.”
Similarly, Teddleton’s skin cleared for the first time after starting ultraviolet (UV) light treatment, but it lost effectiveness after a few years. That’s when Teddleton, who was also diagnosed with psoriatic arthritis at the age of 31, moved to biologics. She describes her first biologic as “the first thing that cleared me up and helped my arthritis at the same time.” It worked for about 10 years, she says. She moved on to a second biologic, but she didn’t like the respiratory side effects. Her third biologic cleared her skin but didn’t help her joints. Late last year, she returned to her first biologic.
A 2011 study of one biologic published in the Journal of Drugs in Dermatology found that, after 12 weeks of therapy, all ethnic groups experienced similar results: BSA involvement shrank by more than 50 percent. Kong says she developed psoriatic arthritis when she was 12, but doctors diagnosed a sports injury. It wasn’t until she was fully flaring and could barely move that she was diagnosed with psoriatic arthritis at age 22.
Kong had even better results when she started taking a biologic at 24, after an erythrodermic flare — characterized by widespread, fiery redness and exfoliation of the skin that can be life-threatening — sent her to the emergency room. “I literally went from being bedridden with 100 percent erythrodermic psoriasis, to 99 percent clear and able to walk, which was a miracle,” she says.
Leaving a Mark
One of the biggest challenges for patients with skin of color is achieving truly clear skin. Psoriasis plaques and other types of inflammation may leave behind hyperpigmentation (dark patches) or hypopigmentation (light spots), which can be more noticeable on darker skin. Light therapy can emphasize the contrast, says Perez. “You basically look like you have vitiligo (a condition in which the skin loses its pigment cells, resulting in discolored patches), because when people with darker skin scar, it gets dark. It looks like stains or bruises. I’ve had to make peace with the fact that even when it’s ‘gone,’ it’s not gone. The scars are there forever.”
While this can self-correct over time, that process takes longer on darker skin. “The best way to prevent dyspigmentation (an abnormality in the formation or distribution of pigment in the skin) is to try to treat the skin condition adequately, sooner,” says Takeshita.
Bleaching creams may help lighten hyperpigmentation, but that requires skin to first clear from psoriasis — and many people have a hard time achieving that.
“Those hyperpigmented patches are sometimes just as worrisome to the patients as the original psoriasis,” says McMichael. “They’re not as itchy, but they still leave behind lesions that other people notice. That’s depressing, because they’ve worked so hard to get the lesions to go away, and then they still have the telltale marker of the disease on their skin.”
Because of cultural misunderstandings and social stigmas, psoriasis can take an emotional toll on patients far beyond their physical condition. Studies, though limited, suggest that the psychological impact can be worse for patients of color.
“I had a hard time covering up and hiding the flakes from my classmates and co-workers,” says Kong. “I barely dated, barely went out; I was a hermit most of the time. I was bullied and made fun of at work so badly that I finally left.”
According to an NPF survey published in 2010, 54 percent of white respondents say psoriasis interfered with their quality of life, compared with 72 percent of minorities. People of color were also more likely to feel self-conscious, embarrassed, angry and helpless. “I don’t think a lot of people know how much of a mental effect it has,” Teddleton says.
For some, these feelings compound with racial prejudice, making them feel even more stigmatized because of their skin.
“As a Mexican woman … I have to prove that I’m not these negative things associated with my culture — and then add psoriasis on top of that, it makes it so much harder,” Perez says. “I’m not only being judged on the color of my skin, but also the condition of my skin. My self-esteem has taken a huge hit.”
However, she realizes that patients of every color face challenges, and even some Caucasian patients deal with dyspigmentation. Perez doesn’t downplay their individual experience with the disease because she knows that, regardless of race, psoriasis is a lifelong battle across cultures.
Kong shares a similar sentiment. “Spanning different skin colors, we all face the same stigma, mentally and emotionally, because of psoriasis,” she says. “Our experiences with psoriasis — no matter the color, or race — are similar.”
Advocating for Awareness
As people of color realize they’re not alone, they’re beginning to speak up and raise awareness.
“When I was first diagnosed, I hadn’t ever seen a black person with psoriasis before,” says Teddleton. “Now, I’ve started attending psoriasis conferences, participating in surveys and joining NPF groups. It really helps when you know that there are other people of your color going through the same thing. A lot of people don’t even know how much help is out there.”
Discovering the events, resources and forums available through NPF was a major turning point for Kong, too.
“It wasn’t until I found NPF at age 24 and met others who suffered like me that I started to come out of my shell. It changed everything. I did a complete 180,” says Kong, who started researching her disease after that severe flare landed her in the ER. “I spent too many years in the dark about it, and my body has suffered irreversibly. You have to educate yourself and find a community that empowers you.”
Kong has also helped her parents understand the disease. “They know this isn’t something I can be cured from, that I have to continuously manage it with ongoing treatments,” she says.
Perez shares her experience to educate others about psoriasis, using social media as a platform to reach more than 4,100 Instagram followers through her account, @aimeestephanieperez. “I present it in a semi-glamorous way by doing selfies and photo shoots, so when people see me, they know what it is,” she says.
As a nanny in the melting pot of Los Angeles, Perez takes every opportunity to educate children about the disease and the importance of accepting others regardless of how their skin looks. When kids point at her spots or ask why she’s wearing long sleeves, she turns it into a lesson and tells them: “I love myself the way I am with my spots, and you should love yourself because of your skin,” she says. “I love that I get to teach them not to judge people on the color or condition of their skin.”