Living with psoriasis

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

Patient #1: 44-Year-Old Female

When were you diagnosed with your disease/condition?

I was 28 years old.

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

I had flakey spots on my elbows that wouldn't go away so I went to see a dermatologist who diagnosed me.

How would you describe your appearance?

Excellent. After almost 3 years of UVB phototherapy I have only a few spots on my knuckles.

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

When I was diagnosed, I had a very mild case of psoriasis and controlled it with topicals. Years later I took medication that caused my psoriasis to flare to the point where topicals didn't work anymore.

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

It takes a lot of time to treat.

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

Have some thoughtfulness about the amount of time and dedication it takes to maintain control over psoriasis.

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

UVB treatment is the best. My psoriasis stays in check as long as I continue UVB phototherapy. Also, I love the staff at my dermatology office. They make me feel welcome every time I see them (2-3x week).

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

It's not contagious! Also, it doesn't hurt.

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

Keep trying to find a treatment that works for you and don't give up. If other people have a problem with your skin, it's really their problem.

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

It will continue to take up a lot of time and force me to maintain my health insurance coverage, which gets more and more expensive every year.

Patient #2: 61-Year-Old Male

When were you diagnosed with your disease/condition?

I was diagnosed about 15 years ago.

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

I started getting white, flakey patches on my elbows and knees.

How would you describe your appearance?

Good. I have very few large, noticeable outbreaks.

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

Education from my physician and the nursing staff was provided at the time of diagnosis. The condition was explained to me and options for managing my condition were discussed and a course of treatment was determined.

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

Physically my condition is not too bad. My areas of flakey skin are small. Wearing shorts and short-sleeve shirts make me self-conscious due to the patches showing.

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

I think most people are self-conscious about their condition and support by health care providers would be great.

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

Light box treatments work the best for me. All the other treatments I have tried over the years don't really help that much.

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

What the disease is, its cause, and the long-term outcomes or the lack of outcome.

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

It is not that big of a deal compared to other major life events.

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

It won't slow me down.

Patient #3: 77-Year-Old Female

When were you diagnosed with your disease/condition?

In 1998, when my husband was diagnosed with cancer.

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

I had rashes on my body.

How would you describe your appearance?

I'm not very attractive.

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

I received no education. I'm told the psoriasis is caused by stress.

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

It has not affected me a lot. I am able to function normally.

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

Tell patients to be patient. There will be good and bad days but it won't be that uncomfortable.

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

The cortisone ointments and cream helped but the psoriasis keeps returning.

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

It is not contagious. I was reported at the YWCA for my psoriasis and they felt I shouldn't be allowed in the pool.

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

It's easy to tell them not to stress, however, it's easier said than done.

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

Not much. I go about doing whatever I enjoy such as traveling and my water aerobics, yoga, and pilates classes. I especially like being in the sun and watching my grandkids soccer, softball, and baseball games.