The Emotional And Physical Pain Of Psoriasis
Wednesday, August 3, 2011
Aired 8/3/11 on KPBS Midday Edition.
The emotional and physical pain of psoriasis.
Patients suffering from psoriasis sometimes feel alone and isolated. The cause of the autoimmune disease is not exactly known, it is understood that the immune system and genetics play major roles in its development. Doctors recognize a number of triggers that exacerbate psoriasis and its severity, but for some it's a debilitating disease. Treatments range from topical treatments to light therapy to biologic drugs. Finding support is crucial to those suffering from psoriasis to see they're not alone and treatment is available.
From the National Psoriasis Foundation;
"The disease affects as many as 7.5 million people in the U.S, about 2.6 percent of the population. Psoriasis occurs nearly equally in men and women across all socioeconomic groups. It occurs in all races, though Caucasians are slightly more affected. Ordinarily, people have their first outbreak between the ages of 15 and 35, but it can appear at any age. Approximately one-third of those who get psoriasis are under 20 years old when the disease first surfaces."
Every year, roughly 20,000 children under 10 years of age are diagnosed with psoriasis, according to the National Psoriasis Foundation.
The five types of psoriasis are plaque, guttate, inverse, pustular and erythrodermic.
Dr. Stacy R. Smith, M.D., Dermatologist
Dr. Vickie Dowling, Psy.D., Clinical Psychologist
CAVANAUGH: August in San Diego is the time of tank tops, sleeveless dresses, shorts, swim suiting a lot of bare skin. But for many people with psoriasis, those skin bearing clothes are never in season. No matter how hot it gets. That's why it makes sense that August has been designated sires awareness month. The condition can be devastating and leave emotional scars. Joining me to talk about the condition and treatments are my guests, San Diego dermatologist doctor Stacy Smith. Doctor Smith, hello.
SMITH: Hello, Maureen. How are you?
CAVANAUGH: Very well. Thank you for joining us. And doctor Vicki Dowling is a clinical psychologist who works with people with skin disorders. Thanks for coming up.
DOWLING: Thank you.
CAVANAUGH: Not only do you treat people dealing with sires, doctor dowelling, but you have suffered with the condition yourself. For people who don't know how devastating sires can be would you share with us your experience in college?
DOWLING: I ended up having a full body break out that dropped me out of college. I couldn't do anything. I could barely brush my teeth, hold a toothbrush, hold a fork. I looked like a third degree burn victim, which is what the airplane attendants thought when I fly flew from one side of the coast to the other to move back in with my family.
CAVANAUGH: Why is it you couldn't take care of yourself? Was it because the condition was so painful?
DOWLING: It was wide spread. I had various types. I had 30% of my body covered. And I could barely move, literally. And I was in a lot of pain with the inflammation of the skin itself.
CAVANAUGH: Doctor Smith, can you explain to us what so psoriasis?
SMITH: Most people describe it as an autoimmune disease. That basically means the immune system or the inflammatory system has gone awry and it inappropriately attacking certain parts of the body. It's mostly the skin, but it does also involve other tissues, most importantly the joints.
CAVANAUGH: How many types there are?
SMITH: 5 or 6 different variations of psoriasis. They all have similar symptoms, however, in that they all cause redness of skin, as well as itching, pain, cracking and bleeding, etc.
CAVANAUGH: You mentioned an autoimmune deficiency or disease of some kind. Do we know what causes psoriasis?
SMITH: Well, that's sort of a sad state of affairs in medicine. We still don't have a precise cause for psoriasis. We don't seem to think it's infectious. If it was contagious, I'd have had it by now. It looks like there are some genetic differences between individuals, and certainly people with genetic make up seem to be at risk for developing this irregular activation in their immune system.
CAVANAUGH: I said in the beginning, I would imagine, and you can correct me, for most people psoriasis is just make a couple of patches somewhere on your arm or your knees or something. And yet doctor dowelling tells us her story of where it's this full body disease. Why is it so severe for some people and not for others?
SMITH: Well, I'd love to tell you. I can figure out exactly why certainly people are affected in certain ways and others aren't. And people have various responses to diseases, and psoriasis is a real mystery in that regard. But a single, individual person can have very mild psoriasis for a while, then can have it bad for a while, and then it can come back bad. The way people take care of themselves is always important with any disease they have. So if people are not taking care of themselves, they're going to have a worse disease. Then there are people who take care of themselves with diet and exercise and still have bad psoriasis. And they haven't been able to figure out why that happens. We do have better treatments than in the past however.
CAVANAUGH: And basically no matter whether it's a small outbreak or a full blown flare up, it's the same condition.
SMITH: Yes, it does remain the same condition with the same genetic background. If you take samples of the skin and look at it, whether it's half of somebody's back or just one patch on somebody's back, it is the same disease.
CAVANAUGH: Doctor dowelling, I want to tell everybody since they can't see you, that you seem to be completely psoriasis free at this point. I just want to let everybody know that. Along with the pain and the discomfort of this disease, there's also a very large emotional component. And you work with that a lot. This is a very isolating disease isn't it?
DOWLING: Yes, because of the skin visibility, it's very stigmatizing because the history of skin problems oftentimes things really were contagious and still are contagious, depending -- even though psoriasis itself is not, most people are ignorant as to what one disease is and isn't so there's a stigma attached.
CAVANAUGH: And as you said, when you got on the plane during your college days, your flight attendant thought that there was something very wrong with you, that you had been burned. What were some other kinds of reactions?
DOWLING: Oftentimes people are shunned and asked to leave swimming pools, asked to leave nail and hair salons, and in restaurants they're oftentimes asked not to be ape guest and certainly asked not to be a service person, whether it's someone seating somebody or serving or cooking.
CAVANAUGH: I see. And is it largely because people do think it's contagious do you think?
DOWLING: I think that's probably a large piece of it. But it's just fear of the unknown, it's general ignorance, and I think a lot of people who actually have the disease itself actually really need to educate themselves as to what type they have. If they have more than one type, come up with a pat answer, a nutshell kind of response. One of the ones I often suggest to people is, gee, my skin turns over in a couple of days, yours turns over in about a month. And that's why I'm shedding skin. And it kind of adds humor. Infusing humor can make both yourself and whoever's scared more comfortable.
CAVANAUGH: It must be depressing though to be treated that way.
DOWLING: Oh, of course. Of course. A lot of people actually are very isolating and will wear long sleeves and long pants even in the heat just to hide from the visibility of other people.
CAVANAUGH: Doctor Stacy Smith, are there -- I know you went into the discussion about not knowing exactly what causes psoriasis, but are there certain triggers?
SMITH: Yes, there are some triggers to psoriasis. One is certain kinds of bacterial infections, strep throat being a classic can actually cause psoriasis to erupt. Concurrent illness, if you become sick for another reason, you can develop a worsening of psoriasis. And it's a very interesting phenomenon, whereby if you already have psoriasis, and your skin is injured, you can develop psoriasis in that area of injury. The classic example of that in dermatology is a patient with psoriasis goes and gets a tattoo, oftentimes they will develop psoriasis around the area of the tattoo.
CAVANAUGH: What about moods and emotional states and stress? Is that a trigger for psoriasis outbreaks?
SMITH: Oh, I get this question a lot. And I always like to tell people that stress makes any disease worse, psoriasis, cancer, etc. There are great studies to detail how much worse psoriasis gets with stress. But clearly it is made source with stress. More personal, it's made worse when a person doesn't maintain otherwise good health. If they don't watch their weight, if they eat poorly, etc, things like that can definitely cause psoriasis to be worse.
CAVANAUGH: Doctor dowelling, along with the idea of people going into nail parlors and people refusing other people with psoriasis in restaurants, there's a notion too, I think, that comes with this disease that it has something to do perhaps with not taking care of yourself, perhaps not having proper hygiene and things of that nature. Have you found that?
DOWLING: Absolutely. A lot of people actually are thought to be -- believed as dirty, actually dirty people, that they don't have good hygiene because if they did, their skin would be quote unquote normal. That's why it's so important for people who do have psoriasis to get involved, and actually the psoriasis foundation is a wonderful resource. And they can be a source -- they have several programs to meet people. The one-on-one program gives you mentor, if you're not quite ready to meet people individually outside, you can actually do it through the mail, through phone, through e-mail. They have a blog and a website that does all of that kind of stuff for children as well as adults. And I think that if you found yourself in the company of somebody who has psoriasis, and you realize you're not alone, that's the door that begins to open to find that you're not abnormal, that you really are normal and have the support of others and participate.
CAVANAUGH: Doctor Smith, when it comes to actual treatments for this condition, where are we?
SMITH: I like to say we live in the golden age of psoriasis, in 2003 the first of a whole group of medicines called biologic agents were approved for psoriasis. Since that time, we have had even better therapies to the point where we have medicines that in many cases can very well control psoriasis so the patient can live an Essentially normal life as long as they continue to take the medication. We do not however have a cure.
CAVANAUGH: What about some of the side effects?
SMITH: Yes, with powerful therapy comes increased risk. And everyone needs to be understanding of that as they go forward. Those risks are generally quite manageable, however. The medicines are slightly suppressive in that they lower the body's immunity. But they do so in a selective fashion. They're not just reducing someone's immunity toering. With careful management, however, small increased risks of things like infection and so forth can be easily managed. There are lymphomas that you mentioned. It's interesting that patients who have psoriasis already have an increased risk of developing lymphoma. And it's not clear whether these medicines make that risk higher or not.
CAVANAUGH: Aren't there several other diseases that are somehow linked to people who have psoriasis? In other words they're more likely to come down with these diseases?
SMITH: Yes, and that's a very interesting and exciting part of current psoriasis research. We're learning there are when they call comorbid conditions. And that includes high blood pressure. Heart disease, limp only Arthritis I mentioned before, and several others. So it's becoming important now to understand that psoriasis is a disease of the entire body, not just a rash. And getting care for your psoriasis includes potentially looking at other organs besides your skin and maybe going to other doctors or your primary care doctor to insure that there aren't other issues brewing for you or you're not at risk for other problems because you are a patient who has psoriasis?
CAVANAUGH: Doctor Dowling, one of your whole modifications here is to get people to speak up and talk about having psoriasis and come to terms with it. I know there's a psoriasis walk coming up here in October. Can you tell us a little bit about it?
DOWLING: It's a great event. It's going to be in the 5th year this year. They have people who support people with psoriasis and soriatic arthritis as well, as well as those who have it. They have vendors there, medical doctors there, they have people who are interested in psoriasis. It's a great way to meet people to get out there and find out about more, what psoriasis is, and people that have it, and that you're not alone. And actually before that, in September some time, the date still to be determined, there's an education event called more than skin deep that provides breakfast, and again is presented by a doctor, and it's -- supports and gives information for the walk as well.
CAVANAUGH: As we heard from the doctor, it's more important than ever before to recognize that this is not just a rash, but it's something that could affect your health. I have been speaking with clinical psychologist Vicki dowelling,ing and dermatologist doctor Stacy Smith, thank you both thank you very much.
DOWLING: Thank you.