Girls just wanna have fun again

| Margaret W. Crane
Cyndi Lauper didn’t much feel like singing when she was diagnosed with psoriasis in 2010. Her first flare appeared on her scalp, and her first thought was, “Is there a shampoo for this?” 
 
Psoriasis quickly took over her body – and her life.
 
On tour at the time, she had to find a way to camouflage the angry red patches that soon covered 90 percent of her body – everywhere except her face. “I had an idea for wearing special netting that looked like skin, except that it kept falling off,” she said. 
 
Lauper tried one “miracle cream” after the other and every natural remedy she could lay her hands on. “I kept doing that, not realizing that my skin was getting thinner and thinner,” she said. “I was like ‘Death Becomes Her.’ And the whole time, I was working and making myself more and more tired.” 
 
On stage, she didn’t feel a thing, but the minute the show was over, her symptoms would return with a vengeance: “My body temperature was out of control – either freezing or really hot.” At her lowest point, she “couldn’t do much of anything.”
 
Lauper eventually discovered the National Psoriasis Foundation. She attended a meeting with Jeffrey Weinberg, M.D., a psoriasis specialist based in Forest Hills, New York, along with a group of his patients. That meeting was the key, she believes, to overcoming the feeling of powerlessness that can be just as debilitating as the physical symptoms of the disease.

Turning her experience into music

Lauper was so moved by the stories of her fellow psoriasis patients that she decided to incorporate them into a song, which was released right before World Psoriasis Day on Oct. 29, 2017. Its title? “Hope.”
 
For Lauper, hope isn’t an abstraction. It’s an attitude rooted in real-world options. It’s an approach based on knowing yourself, your body and your needs, and on believing that health and healing are achievable.
 
“I’m not playing Dr. Quinn, Medicine Woman here,” she said. “I’d never advise someone to use cod liver oil and Saran Wrap! If you have psoriasis, don’t let it fester, because it’s not going to get better on its own. You might as well learn as much about it as you can.”
 
Then, see a psoriasis expert, she urged. “Write down your questions before you go so that you can talk clearly and concisely. And if they start to answer you in a way you don’t understand, ask them to talk more plainly. Don’t walk in there saying, ‘OK, fix me.’ You need to be in partnership with your own body” – and be an active participant in the process.
 
“There’s no reason to settle for shedding, bleeding skin or feeling sick all the time. I found something that works for me: a biologic medication. And I have my skin back.” 
 
And that, says Lauper, is a miracle – one that she hopes will inspire people with even the most severe types of psoriasis. 
 
For more inspiration and to hear “Hope,” visit Lauper’s “See Me Loud and Clear” campaign. If you have questions about your disease or have trouble accessing treatment, contact our Patient Navigation Center. We’ll help you find solutions to live your healthiest life with psoriatic disease. 
 

Driving discovery, creating community

For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.

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