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VNA of Care New England

In Her Own Words: Living with Psoriasis

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Terri is a 37-year-old mother of two who lives on Long Island. Before she first experienced psoriasis, she and her husband ran an electrical contracting business out of their home. Though it took her more than eight years to get the itchy, scaly skin condition under control, today she lives nearly symptom-free.
What was your first sign that something was wrong? What symptoms did you experience?
In 1991, after the birth of my first child, I started getting psoriasis. It started out as a dime-size, dry, patchy area on my elbow—white, scaly, itchy, flaky skin. When the dry flakes came off, it left a red rash. I also got small patches on my legs and stomach, but it was never really bad on my body. Then it got onto my scalp. It covered my scalp and started coming down my hairline. I also got it in my ear. It was really uncomfortable.
What was the diagnosis experience like?
I went to a dermatologist and he diagnosed me right away. It was kind of odd, because even though it's typically a hereditary condition, I'm the only person in my family that has psoriasis.
What was your initial and then longer-term reaction to the diagnosis?
Once something happens to me, I research it until I know everything I can about it. I joined the National Psoriasis Foundation and in their newsletters, I saw pictures of people that have it from head to toe. I felt like I was lucky. In the beginning, I had it in areas that were hidden. What really bothered me was when it went on my scalp. I didn't want to go out in public. I was very self-conscious. I didn't feel good about myself at all, but I never gave up trying different treatments.
How do you manage psoriasis?
My dermatologist started off by giving me topical steroid creams. They helped the patches on my body. One would go away on my elbow, but then another would pop up someplace else. But once it got on my scalp, during my second pregnancy, nothing helped. It never went away. During the pregnancy, I tried UVB light treatment. After a while I stopped going to dermatologists because nothing they did gave me any relief.
A lot of people in the National Psoriasis Foundation would write in with strange things that worked for them. I tried every single one of them—special shampoos, certain moisturizing products. You name it; I tried it. Nothing gave me relief, until I developed psoriatic arthritis in every joint in my body a couple of years ago. I couldn't walk, I couldn't move. I started an oral chemotherapy medication once a week, and later shots of Enbrel (etanercept, the only FDA-approved drug for psoriatic arthritis) twice a week. All of my psoriasis cleared up within 60 to 90 days of taking the shots. I was a normal person again.
Did you have to make any lifestyle or dietary changes in response to psoriasis?
When the psoriasis was bad, I didn't want to go out at all. But the doctor didn't tell me that I should cut anything out of my diet. I found out what vitamins, minerals, and herbs helped some people—I tried everything I heard about. I went out on my own and got herbal remedies. Nothing at all I found helped. Now I don't drink any alcohol because of the medications that I'm on.
Did you seek any type of emotional support?
The National Psoriasis Foundation has helped me so much. I subscribe to their newsletter and read about other people who have psoriasis and what they do that helps. It makes me feel better to see that I'm not alone.
Does psoriasis have any impact on your family?
I worked out of my home so it was very easy to manage at first. Nothing really changed; I just didn't like to go out. My kids went to a school near our home, so I only got out to take them to school and pick them up each day. I felt that everybody could see right through my hair. It totally killed my sex life, too.
What advice would you give to anyone living with psoriasis?
Don't give up. Subscribe to the National Psoriasis Foundation and you'll see that there are people just like you. Keep trying everything. I never thought I would find anything that would work for me, but I never gave up. I'm still looking into everything. Even though my psoriasis is taken care of, I still read up and see what works for other people.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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