Cyndi Lauper talks to PharmaTimes about her experiences with psoriasis
Where and when were you first diagnosed with psoriasis?
I can’t remember if it’s 2010 or 2011, but right around there.
What type of psoriasis do you have, and what does it entail?
I have plaques [psoriasis]. I had no idea what it was... I thought maybe I had a bad dye job. But then I realized something was wrong because it wasn’t going away. And I kept scratching and the more I scratched the worse it got. Then I went to see [a doctor]...he looked at it and he said oh, that’s psoriasis. It just started to get worse and worse. I was literally covered.
Are there certain things that trigger or aggravate flare-ups?
[My psoriasis] got worse and worse. Sometimes I would stay in bed and think it was because I was stressed and I had to rest. And then it would kind of cover my whole body. And then my husband was like, “I’m taking you to the hospital.” And I’m like, “What are they going to do? It’s psoriasis.”
What treatment have you had?
I used shampoo and it alleviated it a little bit, but it messed up my hair. Then I was using cortisone. I went to a lot of doctors. I had a friend who was a really great dermatologist out in California. He looked at [my psoriasis] and he said it’s a pretty severe problem [he gave me a] rubber suit with the cortisone cream, and you go and sleep in that. Then, after that, it went away. I started to stay in the sun, it got a little better. Then it came back, again, and it came back with a vengeance. So then I was really depressed for a while and I kept working, you know, because I have to work. One day I couldn’t take it anymore. I called [my doctor] and I said, “I’m freezing. I don’t feel good. My skin is a wreck,” and he said, “You know, Cyn, you don’t have to suffer. There are so many options. You can come. I’ll talk about all the options. We’ll see everything, and you pick the one that suits you.” Thank goodness I found something that works for me.
What do you find the most difficult aspect of the condition?
I had to spray-paint my body to go on TV because [psoriasis is] a tricky kind of thing. It moves [around]. The minute it’s not one place, you say, okay, I don’t have to look like a nun. I could wear this outfit. And then the next minute, there it is, and you can’t wear that, or you spray-paint yourself.
Does it affect your day-to-day life?
[There was] one day I [couldn’t] even sit with my husband and friends and have some tea or anything – or dinner in the dining room downstairs. I had to sit in this room, alone, bundled up.
Do you feel it has any impact on your role as a performer?
I mean, I was on tour when I was really bad. I was kind of in a desperate situation. It got to a point where I couldn’t regulate my body temperature because my skin was so inflamed. And I was doing all sorts of things and detoxing so much and then running the arena, performing.
Have you ever experienced any social stigma because of psoriasis?
It is not contagious. You know, like when you go to the manicurist and they look at your hands, and say, “What is that? Is that psoriasis?” [Tell them] if it’s psoriasis, you’re not going to catch it. You don’t have to worry about getting the disease. And this one ballerina [told me] how her dancing partners wouldn’t lift her because of the psoriasis.
Do you think public perception of the condition is adequate?
I think people kind of back off. The one thing that people don’t know, that if it is psoriasis, it is not contagious. That is a fact. It’s an inflammatory thing.
What would be your advice to a person newly diagnosed with the condition?
Make sure you’re under the care of a doctor who can really help you with options. You have to know your options. Knowledge is power. Get information from your doctor, and write your questions out before you get there because sometimes you go and you’re like, “Well, we talked but what just happened? What did we talk about?” So it’s always good to have a little notepad and a little pen or pencil that you can write down things and you can ask intelligent questions. Make sure the doctor, if he diagnoses [you with] psoriasis, make sure he specializes in psoriasis. And if a doctor talks in a language you don’t understand, say, “Excuse me, I respect and appreciate everything you’re saying. It’s just I don’t understand what you’re saying. Can you speak in plain, layman’s terms?” If they can’t, just say, “Can you draw a picture? Can you show me some pictures to understand?” And they have plenty of those. You know, you have to educate yourself.
What inspired you to team-up with Novartis and your involvement in the SEE ME campaign?
I met the people from Novartis because I was joking about [my psoriasis] on stage. They contacted my manager, actually who had, had it with me being so sick and working like that. So she said, “Oh, you know, you’re going to meet these people. You’re going to do this thing.” So I found myself in it. I met the people from Novartis, and the next meeting was with Dr. Weinberg, the National Psoriasis Foundation, and patients...who were sick. When I sat down with other people who had it, they told me all kinds of stories about how they live with it, how they cope. Then I felt like, oh, maybe I don’t have it so bad. They all told me how appreciative they were that I was speaking on their behalf, and saying something about a disease that nobody wants to talk about. It was really inspiring for me. And then they were like, you know, “write a song,” and I was like, “Well, what am I going to do? Write a song called Hope? I’m not going to do that.” Then, the first thing I did was write a song called “Hope.” I realized people just need hope for everything. When you’re sick and you think you’re alone, you’re not. You have to give people hope so they can get better.
What is psoriasis?
Psoriasis is a chronic skin disease that affects around 2% of people in the UK.
The condition is often characterised by red, flaky, crusty patches of skin covered with silvery scales, but can also affect nails and joints. In psoriasis, skin cells divide more quickly so that cells are formed and shed in just three to four days when this process normally takes between three and four weeks. This results in a build-up of skin cells, which causes the patches associated with the disease.
Both inherited and environmental factors play a role in the development of psoriasis, and a variety of factors – including infections, stress, damage to the skin, alcohol, and sometimes intense sunlight – can trigger flare-ups of the condition.
There is no cure and complete clearance of skin lesions is not always be possible, but there are several effective treatments available to control the condition, including topical treatments, phototherapy and systemic therapies.
Sources: www.nhs.uk, www.britishskinfoundation.org.uk/psoriasis