Darlene's psoriasis first appeared on her scalp, and despite using a variety of treatments, from shampoos to topical medications, it has never really cleared up. This has been difficult for Darlene to deal with at times and has led to some embarrassing moments. Darlene also suffers from guttate psoriasis on her legs. This type of psoriasis, which forms small pink bumps on the skin, can be painful and has prompted her to eliminate shorts from her wardrobe. In general, Darlene chooses her clothes and hairstyles carefully, in order to cover up her psoriasis as much as possible. Darlene has plaque psoriasis, too, although it has fortunately been contained to a few relatively minor patches on her elbows and ankles. Then last winter, after experiencing months of pain in her feet and ankles, Darlene was diagnosed with yet another form of psoriasis--psoriatic arthritis.
The severity of Darlene's psoriasis fluctuates with the seasons. As she puts it: "The winter months are not my friend." Indoor heating dries her skin, making her scalp psoriasis worse, and the cold makes her joints ache. Mornings are quite difficult. The summer sun, on the other hand, is excellent psoriasis therapy for Darlene (and many others with psoriasis). Right now, after several months with plenty of outdoor time on her family's boat, she says, "I'm in a state of remission."
Darlene is not currently using any medication for her psoriasis. Topical remedies haven't worked for her, and she doesn't think her psoriasis or psoriatic arthritis is severe enough to warrant the risk and/or expense of a systemic or biologic medication. So far during flares, she's been able to cope by thinking positive and believing that it will get better. Then again, psoriatic arthritis could change this calculation.
Psoriasis has been more severe for her daughter Brittany. The most difficult period for Brittany began three years ago when she was 16. She suffered from extreme pain and swelling in her toes, ankles, neck and spine that left her barely able to climb stairs. One day the pain was so bad she couldn't even get out of bed. "For months, no one could figure out what was causing the pain," says Darlene, "and my husband and I grew more and more concerned by the day." Despite the pain and the uncertainty, Brittany never lost hope. “Brittany was an inspiration to me because she always remained positive about getting better, she kept a smile on her face while maintaining a great sense of humor," says her mother. "She knew she had to be patient and she was determined to not let it get her down.”
Brittany's doctors eventually figured out that she was suffering from psoriatic arthritis and prescribed a biologic medication that got the arthritis under control. Virtually pain free, Brittany started college last fall and played on the school's softball team. Because she still had some residual plaque psoriasis, Brittany recently switched to a different biologic. The new medication is working very well on both her skin and her joints.
Darlene thinks a lot about the challenges Brittany may face in the future. She knows that Brittany, with a chronic medical condition that requires expensive treatment, may have difficulties getting health insurance when she is no longer under her parent’s insurance plan. She wonders what will happen if Brittany's medication stops working for her, or if side effects force her to stop using it.
Even though she had suffered with it herself for many years, Darlene didn't know that much about psoriasis before Brittany's ordeal. Once Brittany was diagnosed, Darlene began to do extensive research. Upon learning that psoriasis is often genetic, she looked into her family background and found several family members who have psoriasis; however none of them has psoriatic arthritis. She also realized that some unexplained illnesses that she had in the past may have been related to her psoriasis.
"Because of my experiences, I am extremely passionate about the need to educate the general public about this disease," says Darlene. "By telling my story, I truly believe I might be able to make a difference. My daughter still has a lifetime ahead of her. I can't imagine her having to live her life again with the terrible pain of this disease, the way she did for those months before getting the right medication. I pray that we can reach the community with education, research, and funding to find a cure."
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[Pictures of Darlene and Brittany by Janice J. Lewis.]
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