Joie Zhang, a 17-year-old high school senior from South Riding, Va., was diagnosed with psoriasis when she was 13. Her essay, "You are more than your disease," about living with the disease and offering advice to other young people appeared in the Summer 2010 issue of Psoriasis Advance
Joie recently interviewed by telephone Dr. Jerry Bagel, a clinical associate professor of dermatology at The College of Physicians and Surgeons at Columbia University. A member of the National Psoriasis Foundation Medical Board, he speaks nationally and internationally about psoriatic care
What makes psoriasis unpredictable?
Many diseases are unpredictable. Asthma can become more severe. Arthritis can get better or worse. I think a lot of it has to do with anxiety factors such as stress, climate changes, and, also, it's controlled by a person's genes. At different points of time, different genes are expressed, which makes the psoriasis worse. Or, if they are not expressed, it makes psoriasis better. Psoriasis is a disease of the immune system, which is complex and we don't completely understand it.
Does the environment trigger psoriasis outbreaks?
In the wintertime, when the skin is drier and colder, psoriasis tends to break out more. In the summertime, when sunlight is more prominent, it decreases the growth of the skin and helps the psoriasis go away.
Why are some treatments effective for one patient and not for another patient?
It has to do with genes. Different genes are involved in psoriasis, so some people might be more susceptible to psoriasis or have more severe psoriasis than other people. And there are other factors involved. Some people might be more obese and might need a higher dosage of a drug. That's like other diseases such as, for instance, high blood pressure, where one medication might work but another one might not.
Does psoriasis in kids and teens differ from that of adults?
Well, not really. The distribution and character of psoriasis lesions in adults and children are generally quite similar. There can be a lot of scalp involvement, a lot of elbow and knee involvement, and there could be groin involvement.
Why are certain treatments available for adults but not for kids?
In my opinion, a big part is because the U.S. Food and Drug Administration doesn't want to take too much risk. For one thing, it's more difficult to test drugs on children than it is with adults. Also, there are fewer children with psoriasis than there are adults, so it's harder to find enough young people to participate in clinical trials. And that means drug companies don't have as much motivation to do the studies. Another thing: Parents have to approve giving the test to their children. They may be less likely to give consent for an experimental drug on their child than they would on themselves. Also, because a child is developing, people conducting the tests have to be careful that the drugs are not changing or interfering with that child's development, It seems to be safer to conduct studies on people who are already developed rather than on people who are still developing.
Are there any long—term effects for people who are diagnosed with psoriasis as kids or teens?
Having psoriasis as a child or an adolescent can have a long—term emotional impact. It can affect quality of life, self—esteem and the development of emotional well—being. It might make the young person depressed or isolated, and it could even cause them to consider suicide, though not all young people with psoriasis feel this way. The longer someone has psoriasis, especially as a child, there's a greater chance of impact on the quality of life.
How should children and teens cope with the frustrations of living with psoriasis?
The best thing to do is to try to go to a dermatologist to get it under control. The best way to deal with the frustrations of psoriasis is to treat it aggressively. An example is combining phototherapy, which aims ultraviolet light at psoriasis lesions, with taking a strong drug such as methotrexate. Also, young people with psoriasis should communicate with other people who have the disease. They could join support groups, talk to psychologists or join a National Psoriasis Foundation walk.
Kids often change their ways of dress once diagnosed. Do you recommend covering up psoriasis?
Not just children, adults do it too. People with psoriasis tend to wear long—sleeved clothes in the summertime, even though it's warm, because they don't want anybody to see their psoriasis. They don't wear black clothing because they don't want flaking from the scalp (to show). In the summer I prefer that they get as much sunlight as possible, but I can understand that they are embarrassed by their skin. If they feel they want to cover it because they don't want to show it to other people, I have no problem with that.
Is the medical community making progress in finding a cure for psoriasis?
In the last 10 years, there's been a lot of research that has developed many new medications that can keep psoriasis relatively under control relatively safely. There is work being done in genetics to try to look for a cure. Looking for a cure is important, but I think what's even more important is to develop safe drugs that can keep psoriasis under control. You are looking for something that can make the psoriasis at least go away, with a fair amount of safety. In my mind, rather than put in a lot of effort in looking for a cure, I would be very happy to have medications that are safe and effective.
Driving Discovery, Creating Community
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