Living with psoriasis

Dermatology Nursing, August, 2008 by Linda Cornish, Susan Kleinstein

Dermatology nurses and other health care professionals may sometimes fail to appreciate and recognize the physical and emotional challenges faced by patients with a particular chronic dermatologic disease or condition. "Patients' Perspectives: Living with ... "series shares these important patient views and comments to improve patient care. If you know of a patient who would be interested in sharing his/her experiences with the dermatology nursing community, please ask him/her to briefly answer (3-5 sentences) the questions as outlined here. Submissions can be sent via e-mail to the journal office at dnjrnl@ajj.com or mailed to Patients' Perspectives, Dermatology Nursing, East Holly Avenue Box 56, Pitman, NJ 08071-0056.

Patient #1:

55-Year-Old Male

When were you diagnosed with your disease/condition?

I was diagnosed approximately November 2006.

When and how did you find out you had the disease/ condition?

I had an outbreak of skin plaques.

How would you describe your appearance?

Currently, there is some discoloration spots throughout my body.

What kind of education and support were you given at the time of your diagnosis?

Discussions with my dermatologist and through handouts. I also read a lot online at psorisasis.org

How has your disease/condition affected your life, physically and emotionally?

The disease absorbs time in my maintenance routine. I wish I didn't have it, but I have not let it have a significant impact otherwise on my activities. I also spend more time on my fitness.

What would you like health care providers to know about treating people with your disease/condition?

More time with MD consult, and observation of skin condition.

What worked for you and what didn't (treatments, emotional support, etc.)?

My current regimen is UVB and salt bath, at a lower dose.

What do you wish society knew about your disease/ condition?

That psoriasis is not contagious.

What would you tell other people who are newly diagnosed with this disease/condition?

Make yourself as comfortable as possible, so you can rest. Appearance is secondary. Also, buy a handheld UVB device.

How do you think living with this disease/condition will affect your life in the future?

My first year I was not so sure. I believe it will make me more conscience of my health. It will make older life more complex.

Patient #2:

65-Year-Old Female

When were you diagnosed with your disease/condition?

When I was 20 years old, 1962. I had just begun teaching junior high school in the South Bronx in New York City. It was very stressful.

When and how did you find out you had the disease/ condition?

I developed redness and itchy spots, mainly on the knees and elbows. I don't recall if the doctor I saw was my general practitioner or a dermatologist, but I was told it was psoriasis.

How would you describe your appearance?

My skin is mostly clear now.

What kind of education and support were you given at the time of your diagnosis?

Very little. I was prescribed some skin salve. I don't remember more.

How has your disease/condition affected your life, physically and emotionally?

In the past, I avoided short-sleeve tops and preferred pants or stockings to cover the spots. I was self-conscious about them. Now, I have no restrictions and no problems.

What would you like health care providers to know about treating people with your disease/condition?

I would like them to follow the Kaiser model. My care there has been excellent. Also, they should all know about the National Psoriasis Foundation (NPF), which gives excellent information and support.

What worked for you and what didn't (treatments, emotional support, etc.)?

Some creams, such as clobetasol, Dovonex[R], Cyclocort[R]. But the best is phototherapy, which I get once a week at Kaiser and which has kept my skin clear. It doesn't help my scalp but the problem there is minimal.

What do you wish society knew about your disease/ condition?

That psoriasis is not contagious, and that people with psoriasis should be accepted for who they are. I'm lucky my case is mild and I have great sympathy for those who suffer more.

What would you tell other people who are newly diagnosed with this disease/condition?

That although there is currently no cure, this is being worked on, and many treatments are excellent. Try what works for you (phototherapy, creams). Seek out the support of NPF and find others for mutual support through the NPF.

How do you think living with this disease/condition will affect your life in the future?

I don't see any problems. I do go to dermatology treatments weekly for phototherapy and this takes time. Also, I'll choose to live near a Kaiser facility that offers this treatment, but I don't plan a move.

Ask Your Patients to Participate in "Patients' Perspectives: Living With ..."

Dermatology nurses and other health care professionals may sometimes fail to appreciate and recognize the physical and emotional challenges faced by patients with a particular chronic dermatologic disease or condition. To better bring patients' feelings and perceptions into focus, the Dermatology Nursing Editorial Board is introducing a new series, "Patients' Perspectives: Living With ...," and we need your help.