People of all races overcome psoriatic disease
For many people, the decision to relocate takes a lot of time and careful consideration.
But for Daniel Lopez, it was simple: He was willing to move with his family to a new, unknown city because he wanted his son, who has psoriasis, to have a better childhood than his own.
Lopez grew up in a small town — "the last town before the mountains, literally at the end of the road" — of about 4,000 people in Mexico. To his knowledge, he was the only person there living with psoriasis.
"It was horrible," said the restaurant manager, 40. "People would see me and think I had that disease from the Bible — leprosy. They'd say, 'Stay away from that kid.' It was pretty traumatic."
Lopez didn't even hear the word psoriasis until he was 10 years old. He was told he had an allergy — an allergy that made his small hands crack and bleed. His only treatment option was Vaseline, which made the symptoms bearable and kept his fingers mobile.
So when Lopez's son, also named Daniel, was diagnosed with psoriasis almost 30 years later, Lopez vowed to do whatever it took to make sure his son never had to suffer the same physical or emotional pain that he had.
That included relocating from Arizona to Portland, Ore., in 2010. Lopez felt that Portland was more accepting of those with psoriasis, and because the city is home to the National Psoriasis Foundation (NPF), he was hopeful that there would be better access to doctors and new treatments.
"It's really hard to see your son go through what you went through as a kid," Lopez said. "One thing I learned with divorced parents and being raised by the triangle of them and my grandmother is that moving is not such a shock."
A deep impact
In many ways, the Lopez family's situation is common. Psoriasis can run in families, and parents who have psoriasis often want to protect their children from the hurtful comments or stares they may have encountered in their own lives.
It's estimated that psoriasis affects 125 million people worldwide. Although it touches people of every race, it is reported less frequently in African-Americans, Asians and Latinos.
But Dr. Andrew Alexis, director of the Skin of Color Center at St. Luke's Roosevelt Hospital and associate professor in the dermatology department at Icahn School of Medicine at Mount Sinai, believes the numbers are misleading.
"My impression is that it is probably more common than what is reported in the medical literature and that this discrepancy is due to having few studies that investigate the prevalence of psoriasis in nonwhite patient populations," he said. "Also, limitations in access to care and lower awareness among patients of color may contribute to underestimating the prevalence."
But no matter how common the prevalence, psoriasis is life-changing for those who live with it each day.
"I don't look at it as a racial thing; you have to look at it as psoriasis affects every single race," said Ninfa Cantu, a Mexican-American support group leader in San Antonio who was diagnosed with psoriasis in 1979. "It might not affect a lot of people in a certain group, but the ones it does, it affects deeply."
In San Antonio, where about 63 percent of the population is Latino and 105-degree temperatures are not outside the norm, psoriasis is part of the landscape, Cantu said. As the group leader for Nuevo Amanecer (New Dawn) Bilingual Psoriasis Support Group — the first bilingual psoriasis support group in the nation — Cantu often sees entire families affected by psoriasis.
"It might be more rare for us, but come here and look," she said. "You'll see it a lot."
On the surface
On a physical level, psoriasis can present extra challenges for people of color.
"I see many African-American and Latino patients who present with very severe psoriasis who were not previously aware of their diagnosis or the treatment options for psoriasis," Alexis said.
And those with darker complexions, especially African-Americans, can sometimes experience post-inflammatory hyperpigmentation, a condition in which areas of skin become darker than the person's normal skin tone.
Hyperpigmentation can be treated, but J.T. Scott, who is African-American, said when it affected him, it was obvious enough that people asked questions.
"It didn't really itch, but people always make their own assumptions," said J.T., 15, of Virginia Beach, Va. "It kind of looked like burns."
His mom, Amy, recalls another time when a new medication cleared J.T.'s skin but temporarily left bright white hypopigmentation spots, which can be a side effect of some topical treatments such as steroids.
"If he was white, it wouldn't have been as noticeable," said Amy.
Psoriasis in African-Americans also can be harder to diagnose because its appearance can be similar to that of other inflammatory skin conditions, Alexis said.
"In particular, it tends to have less visible redness and has scale that can be thicker," he said, adding that it can look less like "textbook psoriasis."
In general, treatment is the same for people of all skin tones, although patients with darker skin who receive phototherapy often need higher doses to see significant improvement, Alexis said.
But the pain of psoriasis can go deeper than what can be treated with creams and lights.
Living with psoriasis can have a deep emotional impact in a society that often judges based on appearances.
Dr. Charles Crutchfield of Crutchfield Dermatology in Eagan, Minn., said he often sees the psychological component of psoriasis in his practice. And he says it is universal, across every race and ethnicity.
"It really is life-changing; it determines how people behave," Crutchfield said. "Some patients will make excuses to their friends and tell them they don't want to go to a party, or say they're sick because they're having a flare. It can be hard in social situations or when people are dating."
Larry Ampadu, 26, agrees that the psychological pain can be a burden.
"A major part of psoriasis for anybody is being apart from the norm," Ampadu said. "You never want to have that feeling."
Ampadu, who works in commercial real estate in Boston, said his diagnosis caught him completely off guard.
"Nobody I knew had anything like this," he said.
Ampadu, who is African-American, said the unknowns of psoriasis delayed his diagnosis for a few years, and he's since been diagnosed with psoriatic arthritis, as well.
He said that although, initially, he felt very alone, he looked for a way to combat that and turn it on its head. He became a mentor with the NPF's Psoriasis One to One mentor program, lending an ear to those who call and email looking for support.
"Eventually, you have to say, ‘I own this. I'm not going to be overcome by it. I'm going to stand on my own two feet,'" he said.
Another universal experience for those living with psoriasis can be discrimination.
Cantu, the San Antonio support group leader, said she has encountered negative comments in restaurants and public places because of her choice to wear skirts, shorts and shortsleeved shirts.
"Even among our own people, we are considered lepers," Cantu said. "Someone (with psoriasis) told me, ‘You're the only person in church who welcomed me.'"
Amy Scott, the Virginia Beach mother of a teen with psoriasis, said there were times when barbers weren't willing to cut J.T.'s hair because they weren't sure if the psoriasis on his scalp was contagious.
"He had it on his cheeks, eyelids, scalp, ears … he couldn't hide it," she said.
It's been a long road for J.T., who was diagnosed with psoriasis at age 4 and psoriatic arthritis at age 11. He now plays on his high school football team and works out almost every day to keep his joints healthy. His psoriasis shows now only if he wears short sleeves, which he said is a huge improvement.
"I don't really like it, but I don't let it hold me back," said J.T. "It's just on the surface — it doesn't define who you are."
The best response to the negativity is education, said Cantu.
"It's important for people to know about psoriasis," she said. "A lot of people aren't going to change. We know that, but if we can change some, that is really important for psoriasis."
J.T. has done his part to spread the word in his community. He serves as a National Psoriasis Foundation Youth Ambassador. He's taken part in the Walk to Cure Psoriasis and spoken in front of panels of doctors and specialists about his experience.
"J.T. has always been strong in the fact that, when other people make comments about his skin, he will educate you about what psoriasis is," his mother said.
For Jennifer Yi, being diagnosed in college was overwhelming and isolating, but she doesn't tie that to being Asian-American.
"Psoriasis takes a psychological toll on anyone," said Yi, 23, who works in marketing in Los Angeles. "It almost put my life on pause."
But an important step in the psoriasis journey is sharing it with those who really get it, said Yi, who found community this year when she ran the Chicago Marathon for Team NPF.
"Try to get involved in a support group," she said. "I wish I had. I was feeling alienated and detached. Surround yourself with people who are understanding. No one is going to understand like someone going through the same thing; there's a deeper, unspoken understanding."
Crutchfield said there are also doctors who grasp the big picture of psoriasis, including the cultural cosmetic practices that might affect treatment.
"You don't have to suffer; something can be done," he said. "There are physicians who really care about treating it."
And sometimes, there are volunteers who want to help, as well. Following a stroke in 2005, Cantu has made it her mission to educate and support people with psoriasis. She works as a support group ambassador and a translator because the language barrier can sometimes stand in the way of people getting the help they need, she said.
That's when she steps in, talking to people from around the country. Some of them are struggling with insurance companies, or need help communicating with their doctor, and many want to connect with someone who has been in their situation.
She wants to help all of them.
"I just told the NPF they don't need my permission — they can just give people my phone number," she said.
Lopez's voice gets a little lighter as he talks about his son, now 10, who, after a brief hospitalization when they first arrived in Portland, is thriving.
"This is the clearest he's been since he was 2 years old," Lopez said. "It's amazing. There are so many things they can do now for him."
Although Lopez himself has hit another challenge — he's part of a clinical trial and learned he has been receiving a placebo — his family, including his wife and three other children (one who has mild psoriasis, as well), don't regret their move.
In fact, just as they had hoped, Lopez said it brought them to a place where the people are open-minded and friendly and where psoriasis seems to be more accepted.
The family now takes part in annual Walks, and his son's childhood has been much better than his own. As a result, Lopez said he's seen Daniel's self-confidence blossom.
"The past couple of years, I went to his classroom and talked to the teachers and kids about psoriasis — except this year,"
Lopez said. "This year, my son decided he wanted to be the one to talk."