Twins and psoriasis
Skin disease brings twins closer, advances research
From September/October 2005 Psoriasis Advance
Chelsea and Tiffany Hunseder, 17, are fraternal twins who shared just about everything growing up. All that changed a year and a half ago, when psoriasis suddenly struck Chelsea with devastating force, covering most of her body with bright red spots. The trauma sent the twins and their parents, Kathy and Mark, into a tailspin.
Cristy and Angie Boisvert, 30, are identical twins — side by side, they're mirror images of each other. Psoriasis set them apart, too, when they were growing up in coastal Maine. Cristy developed psoriasis as a toddler; her twin did not get psoriasis until she was 18.
Researchers know that psoriasis is triggered by both genetic and environmental factors, and studies show psoriasis tends to run in families — about one out of three people with psoriasis reports that a relative also has the disease. Increasingly, researchers are studying psoriasis in twins to learn more about the genetics of the disease and the interplay with environmental factors. We spoke with two families with twins whose lives have been changed by psoriasis.
Hunseder twins: Chelsea and Tiffany
Chelsea, top, and Tiffany Hunseder
|
|
The Hunseders of Colorado Springs, Colo., are no strangers to psoriasis. Kathy Hunseder's brother and two aunts had psoriasis, so they knew it ran in their family. Still, it was a blow when nearly the entire surface of her daughter Chelsea's skin suddenly erupted into red spots — a form of psoriasis known as guttate (pronounced GUH-tate) — a year and a half ago. Her twin, Tiffany, did not get psoriasis.
"It was horrible," says Chelsea. "Everything changed — how I felt about myself, what I could wear. I was never really the type of person who cared what other people thought of me, but when you're a 16-year-old girl, you start to care what people think."
Psoriasis becomes third wheel for twins
As Chelsea entered a strange, new world with her skin, her family tried to adjust as well. "I was surprised that I didn't get it," says her twin, Tiffany. "We shared everything — whenever she got sick, I got sick. She was going through this all by herself. It was like, why her?"
Parents Kathy and Mark were struggling, too. "We didn't know how to handle it," says Kathy. "We didn't know how this kid felt."
Chelsea's initial treatment consisted of greasy creams rubbed on her body every night. "She would just lay in bed because she said it hurt," says Tiffany. "It was such a pain, and it all added up. She started hating everything."
Going to school was difficult because other kids teased her about her psoriasis. She eventually became depressed and stopped attending school. Home life was strained as well. Her mom tried to remind her to apply her treatment, which resulted in constant arguing.
Treating involves the physical and the emotional
In May 2004, Chelsea began treating her psoriasis with the biologic drug, Enbrel (generic name etanercept), and her skin has been clear for about nine months. She also began seeing a counselor in the spring, who is helping her come to terms with the disease.
Chelsea says she doesn't dwell on why she developed psoriasis and her twin didn't.
"I never felt resentful toward Tiffany, because it wasn't her fault or my fault. But I'd look at her and be jealous — she could wear what she wanted and I couldn't," she says, referring to covering up her skin to hide the psoriasis.
When people ask about her psoriasis, Chelsea has learned what to say about the disease and how to say it. "I always say it's not contagious — it looks like it is but it's not. It's hereditary."
Taking action is a family affair
Chelsea and her mom Kathy attended the National Psoriasis Foundation® 2005 National Conference Aug. 5-7 in Boston, Mass., where they learned more about psoriasis and met others who have shared the same experience. Chelsea has used the Psoriasis Foundation message boards as a source of support. Kathy recently became a Psoriasis Foundation affiliated support group leader in Colorado Springs. And Mark Hunseder found his own special way to support Chelsea by building her a 1973 Dodge Charger racing car, which she races in nearby Pueblo, Colo. "That's helped me cope too," says Chelsea, with a laugh.
Because she dropped out of her school last year, Chelsea will spend her senior year at an alternative school this fall. After a lifetime of attending school together, Tiffany will miss sharing her senior year with Chelsea. But she's happy that the psoriasis isn't a daily burden any more.
"I hope she gets to be happy because I like to see her happy," says Tiffany. "I feel her pain all the time because we are so close. I hope that never changes really."
Boisvert twins: Cristy and Angie
|
Angie, left, and Cristy Boisvert
|
Cristy Boisvert (pronounced "bwa-vare") cannot remember a time when she didn't have psoriasis. By contrast, her identical twin Angie did not develop psoriasis until she was 18.
The twins, now 30, have early memories of Cristy spending long hours in the bathroom every night while their mother Bernadette applied psoriasis medications to Cristy's scalp.
"It was good mother-daughter time," says Cristy. In the morning, though, it sometimes took three washings to get the oil out. "Sometimes I would have to go to school with greasy hair and it was embarrassing. It was hard having a twin sister who didn't have psoriasis."
Bernadette recalls Cristy first developing psoriasis when she was about 2, just after an older daughter had been struck by a car and hospitalized for nine weeks. "I always personally believed it was this very stressful family event that triggered the onset of Cristy's psoriasis," says Bernadette.
During her school years, Cristy endured a lot of teasing, but she learned to keep it in perspective.
"It made me look inside myself," she says. "My mom was an angel the way she prepared me. She said God gave this to me as a gift, for a reason. I don't think I questioned why I had it and Angie didn't."
During the twins' senior year of high school, though, Angie traveled to India as an exchange student, and while she was there, psoriasis appeared on her scalp. She knew what it was right away and wrote home and told Cristy. She wasn't sure what triggered it, except for the stress of
being in a new environment and eating new foods.
Today, Angie lives on a rural, wooded property in Cooper, Maine, where she is working toward a recreation management degree, and raising her 5-year-old daughter Isabella. She is due to have another baby in January, with her partner Lucas.
Her psoriasis improved during her last pregnancy and seems better during this pregnancy as well. She believes hormones play a role.* She treats it mostly with over-the-counter topicals and homemade blends, such as olive oil and rosemary.
On the opposite coastline, Cristy lives in San Diego, Calif., where she works at an architecture firm and is two exams away from becoming a licensed architect. While Cristy's psoriasis was fairly well controlled in her 20s, she estimates psoriasis now covers 40 percent of her body.
Like her sister, Cristy believes hormones play a role in psoriasis. She recently stopped using birth control pills after 11 years and suspects the recent flare may be related. She restarted the pills again and is seeing some clearing. She uses prescription and over-the-counter topical treatments for her psoriasis, but her favorite therapy is the sun, which is why she chose to live in San Diego.
Psoriasis adds to shared experiences
Although the twins live on opposite sides of the country, they enjoy a close relationship, writing each other about their lives and sharing when they've had a new outbreak.
"We can help each other out a little bit," says Cristy, a Psoriasis Foundation Member and an affiliated support group leader in San Diego. "Because I've had it so long, I am very mature in my outlook of the disease."
Her mother admires Cristy's ability over the years to accept the psoriasis — even when she was a young girl and the only twin at that time with the disease.
"I do not ever recall an attitude of, 'Why me?' She simply wanted to understand," says Bernadette. "It was hardest of all for me to see her experiencing something that I could not fix. I still wish, as I did then, that I could kiss it away."
*In a study published in the May 2005 Archives of Dermatology, more than half of pregnant women reported their psoriasis improved during pregnancy. In addition, high levels of estrogen, which occur during pregnancy, correlated with psoriasis improvement. Jenny Murase, M.D., was the lead author on the study and received a grant from the National Psoriasis Foundation for the study.
|
