Living with psoriasis

Dermatology Nursing, Dec, 2007 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:

72-Year-Old Female

When were you diagnosed with your disease/condition?

I was diagnosed with psoriasis over 10 years ago.

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

I found out about my condition after coming to the dermatology department.

How would you describe your appearance?

My skin has terrible multiple bumps and redness.

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

None.

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

I can't wear clothing that will show blood. I'm embarrassed about the redness and bumps on my skin. I also have terrible itching.

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

I would like them to know more about skin diseases.

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

No treatment that I have tried has really worked so far.

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

I wish people knew more details about my specific condition. Perhaps they would better understand if they had a connection with a person with psoriasis.

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

I would tell those people to make certain that their dermatologist knows what they're talking about.

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

I understand from many studies that I can die from this condition. I find that very scary.

Patient #2:

27-Year-Old Female

When were you diagnosed with your disease/condition?

I was diagnosed with psoriasis when I was 21. I realized that it came about during and after a period of great stress.

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

I started getting patchy red areas on my forehead, and people started asking me what was wrong. I also had a very flaky scalp, so hair stylists were always questioning what I had. I finally went to the doctor, and she told me I had psoriasis.

How would you describe your appearance?

My appearance is generally normal, until you look closely.

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

The doctor told me that there is no cure and that this would be a lifetime thing. There was not much support offered.

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

I feel somewhat embarrassed by my condition at times. I would never wear revealing clothing or clothing that would put my condition on display. I also have white flakes all over my clothes sometimes. I am depressed a lot about my condition. I think about how it will never go away and how I'm stuck with it for the rest of my life. Treatment helps, but it is very troublesome to get treated 2 times a week.

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

We're embarrassed and shy about our condition. It would help to offer classes or a support group to discuss things that might help.

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

Creams worked for years, until it started spreading to other parts of my body. UVB is helping a lot, but it does not cover areas that can't be treated by light. Periods of stress also make my condition worse.

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

People live with different conditions, illnesses, and diseases all of the time. People need to embrace differences and not ostracize them. It is just a skin condition, and it does not affect who a person really is on the inside.

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

Relax. Don't stress. Get treatment early and don't let it spread. Ask your doctor questions. Ask about different kinds of treatment that are suitable for you. Stick to your treatment and be religious about it.

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

If I didn't have health insurance, my condition would spread. If my condition spreads and gets worse, I would be severely depressed. I am probably very prone to depression, so I would need constant support. Therefore, I will have to hold a job that offers insurance. This condition does make me feel unattractive.