Living with psoriasis

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

Patient #1: 46-Year-Old Male

When were you diagnosed with your disease/condition?

I was diagnosed with psoriasis at age 20.

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

For a year or so I had these spots. My mother thought it was ringworm. A spot showed up on my penis and I was in the doctor's office the next day.

How would you describe your appearance?

I'm a good looking guy with a few spots here and there.

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

The doctor handed me a bunch of pamphlets and medicine samples.

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

I was a little self-conscious, but I'm over it.

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

Just be honest, even if you're not sure what the deal is.

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

The 'roids and the UVB box worked. The National Psoriasis Foundation was a great find.

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

Don't really care.

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

The worse you feel about it, the worse it gets.

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

I may never be a male model or exotic dancer.

Patient #2: 59-Year-Old Male

When were you diagnosed with your disease/condition?

I was diagnosed with psoriasis in 2001/2002. I've had three major outbreaks in this time period, requiring time off from work.

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

I didn't realize this was going to be a lifetime condition, so at first I didn't think it was a big deal--nothing to be concerned about. Different story now!

How would you describe your appearance?

I'm usually full clothed. Nobody would know I have this condition. My legs, thigh, arms, and crotch have 50% coverage. More and more, I'm exposing my arms to the general public.

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

I received suggestions and advice from the doctor. I feel there is a strong need for more medical information in the educational department. Perhaps a short class is needed.

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

Physically, using steroidal ointment has made my skin thin as tissue. I easily bruise and bleed at the drop of a dime. Emotionally, I have a good attitude and I'm fine. I have no depression or anything like that.

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

During the day when I go about my daily routine, I don't think or get too bothered with my condition. At bedtime when I try to sleep, it feels like my skin is crawling. First, I scratch at my ankle, then my elbow, then calf, then thigh, etc. over and over. A sleep aid would be helpful.

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

The only option I have is light treatments and creams/ointments. It works, but at a slow pace. My latest outbreak asted longer than normal. I try to wear shorts at home and get a little sunlight.

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

It's not a rash. It's an autoimmune disease and it's not contagious.

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

Start therapy immediately. Be patient, treatment will work. Keep skin super moisturized. Be prepared to stain clothes, furniture, and bed sheets from creams/ointments.

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

In the future, who knows? Perhaps there will be a treatment solution. If not, my routine will stay the same.

Patient #3: 42-Year-Old Female

When were you diagnosed with your disease/condition?

I was diagnosed with psoriasis in 1987. I was about 22 years old, but I noticed red spots starting at age 19.

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

I noticed red spots on my legs at age 19. My parents took me to our family dermatologist by the age of 22 and he diagnosed psoriasis. It also ran in our family and my brother started having redness on his elbows and knees.

How would you describe your appearance?

I was a very active and fit teenager. Cheerleading and dancing were a big part of my life. I looked healthy, but felt unattractive as the red spots started to "sprout" on my body.

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

I was told that psoriasis was incurable and to put topical medicine on it. My father showed me newsletters from the National Psoriasis Foundation. I knew the sun and salt water healed my skin, so I stayed near the beach in the summertime.

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

As the years went by and I entered into the stresses of adulthood and independence, my skin continued to get worse. During the winter and spring, I covered my arms and legs until the sun came out again. I always have to think about what I can wear to cover my skin.