As a volunteer advocate with the National Psoriasis Foundation [6], this is simply part of her job. The role has helped her through some of her darkest days. "It has empowered me," she says.
Seven years ago, you wouldn't have caught her taking a picture with famous country music stars or sharing her story with total strangers. "I wouldn't have spoken in front of any one or worn short sleeves or panty hose because I didn't want anyone to know I had psoriasis," says Diane, a government contractor who processes grants.
Diane was just 5 years old when she was diagnosed with plaque psoriasis. And despite the fact that she was so young, she can still recall vividly her first experience at school. "The teacher said I couldn't come to school with psoriasis on me, and they quarantined me for three months because they didn't know what I had," says Diane. Her teen years weren't much better. "That was the hardest part of my life."
But Diane "found her voice," at age 45, when she was diagnosed with erythrodermic psoriasis, which causes redness, shedding and itching. It covered 99% of her body. "My skin was raw and bleeding and I was in so much pain."
It was then that she knew she had to do more to help herself. She went online to learn more about the disease and found the National Psoriasis Foundation and its support groups. "They helped me through it," says Diane. "The next month they went to Capitol Hill, and although I could hardly walk, I went and spoke before Congress, telling my story to help get funding to find a cure for psoriasis."
The experience was life changing for Diane. "Talking to other people helps me stay positive," she says. "The former president of the foundation once told me that I have a voice and a story. Well, they gave me that voice," she says, adding that she also started a foundation support group that now covers four states on the east coast.
Her dermatologist gave her a prescription for the itching and has recommended different biologic treatments over the years. Today, Diane takes a biologic drug by self-injection every other week and says her skin is 50% clear. "The plaques used to be real thick and scaly, but I don't have that thickness anymore," she says.
The greatest pieces of advice she gives to others is to work closely with your doctor, talk about your feelings and learn as much as you can about psoriasis. "I didn't get here overnight. I used to be very negative, but once I got talking to the doctors and people, I got better. Today, I am fantastic!"
Based on her life experience, Diane offers the following advice for people living with psoriasis:
- Start a support group by running a free ad in the health section of your local newspaper.
- Share your emotions with your doctor and loved ones to stay positive.
- Arm yourself with knowledge by researching all available treatments.
Have a story to share?
We’d love to hear your story! Email us your advice for coping with psoriasis at: Guides@healthmonitor.com [7]