Pittsburgh Walk to Fight Psoriasis
Articulate, wise and coping with serious illness, Rose Franzen, 13, of Wheeling and Sewickley, Pa., has been named youth ambassador for the first Pittsburgh Walk to Cure Psoriasis.
Last fall, at age 12, Rose was diagnosed with psoriasis and, a couple of months later after experiencing pain in her back, she also was diagnosed with psoriatic arthritis. Flare-ups of the disease caused her to miss many days of school and, as a result, she completed the spring semester through homebound instruction.
The National Psoriasis Foundation’s first Pittsburgh walk, with 1K and 5K options, will take place in North Park at 9 a.m. Saturday, Oct. 2. Registration, which is free and open to all ages, begins at 8 a.m. While it is the initial event to be held in Pittsburgh, the organization has been conducting walks in other areas for a number of years. A total of 18 walks are being held around the nation this year, Rose said.
As youth ambassador, Rose, who is a freshman at Wheeling Park High School, is considered “the face of the walk.” She explained, “I give a speech at the walk. I cut the ribbon at the beginning.” In addition, she is recording messages that are being transmitted as automated phone calls to participants this week.
Participants can register individually or as a team, and they can walk either course at their own speed. “It’s good because a lot of people have arthritis,” she remarked. Walkers may collect pledges, but it is not a requirement to enter the walk. For more information and to support Rose’s fundraising efforts, check her personal page on the walk website at walk.psoriasis.org/goto.rosefranzen.
Franzen plans to walk as part of a team including her parents and her older brother, Tim. It’s likely she will do the 1K option because her arthritis has been flaring up recently.
“She’s had a relapse … She’s having a really hard time now,” explained Rose’s mother, Debbie Sauder Franzen, who grew up in Wheeling. “I told her, ‘It’s OK to do the 1K, and it’s OK if you don’t finish it. The point is you do the best you can every day.”‘
At present, Rose and her mother are living in Wheeling so that Debbie can help care for her mother, Florence “Moe” Sauder. Husband and father Mike Franzen and son Tim, who also is a high school student, remain at home in Sewickley. Older son Joe is a student at Denison University in Granville.
After moving to Wheeling last fall, Rose entered seventh grade at Triadelphia Middle School; around that time, she received the official diagnosis. “Looking back, I’ve probably had psoriasis since about fourth grade,” she said.
After noticing a rash that was getting worse, Rose was referred to a dermatologist. The illness was accompanied by debilitating fatigue. “She was so tired she was sleeping sometimes 20 hours a day,” Debbie recalled.
When the fatigue strikes, Rose said, “Sometimes she (her mother) can’t wake me up.” The psoriatic arthritis also makes it difficult and some days, impossible, for Rose to move for a couple of hours or longer after waking. Regarding the symptoms and side effects, she said, “Most people will have it controlled for a while, then have flare-ups.”
Rose is under the care of a dermatologist and a rheumatologist, both in Pittsburgh. She has been told that up to 30 percent of the population diagnosed with psoriasis also will have psoriatic arthritis.
In the past 15 to 20 years, researchers have determined that psoriasis is an autoimmune disease, Debbie said.
The exact causes remain unknown, but experts think there may be a genetic component and that some cases may develop after a person has strep throat. Stress, environmental factors and seasons may exacerbate the problem for some people and result in flare-ups of symptoms, Rose said.
Despite missing most of the second semester, Rose was advanced enough in her studies to skip eighth grade and enter Park as a ninth grader this fall. “The school district has been so great and accommodating,” her mother said. “Academically, she’s at a point where they felt being at Park would be better for her. She loves the school. She loves being at Park.”
Recently, Rose had a medical setback. She began taking an injectable medication, twice a week, for three months; the injections were cut back to once a week after the first month, but she had a flare-up and is now back to twice-weekly injections. “She had more skin lesions again toward the end of summer, then the real fatigue came with it,” her mother said. “Rose was taking Oglebay Institute workshops at Towngate Theatre, and she had to drop out of a play. That speaks volumes to me as to how that was affecting her.”
The teenager’s ability to make friends hasn’t been affected by moving to a new town and entering different schools. Rose finds that her new friends are understanding of her condition. “They’ve been really helpful when I’m stressed out over it. They’ve been very understanding and want to help,” she said. In fact, Rose told her mother, “For the most part, the kids do not see my psoriasis, they see me.”
Dr. Lisa Pawelski, a Pittsburgh area dermatologist, also developed psoriasis as a young teen. She said there are two peak age ranges -20-30 and 50-60 – for the disease’s onset, but it can happen at any age, “from infancy through seniority, and anywhere in between.” She has patients as young as 6 or 7 in her practice, but she added, “It’s not a common thing in kids.”
Pawelski said research indicates that about 75 percent of people with psoriasis develop it before age 40. In addition, she said, “The age of onset tends to be earlier for women than men.”
The dermatologist said it is estimated that 2 to 3 percent of the world’s population has psoriasis, including 7 to 8 million Americans. Experts estimate that anywhere from 5 to 30 percent of patients with psoriasis develop psoriatic arthritis.
Statistics indicate that up to 1 percent of children have psoriasis, she said.”In children, the most common psoriasis type is ‘guttate,’ or ‘drop-like,’ frequently seen after a strep infection. This type frequently resolves once the infection is treated,” she explained.
Regular forms of psoriasis follow a chronic course, with symptoms “typically a little worse in winter,” she said.
Today, researchers consider psoriasis as an autoimmune disease, Pawelski said. “Probably, there’s not a single cause; it’s multi-factored,” she related. Multiple factors such as strep infections, medications (notably beta blockers and anti-malarial drugs), injury to the skin and genetic predisposition may contribute or cause the disease, she said.
“How much each of these factors weighs is probably different in each patient,” Pawelski commented. “It’s an extremly complex disease. We don’t have a unifying hypothesis yet.”
While psoriasis is treatable, the condition is not preventable currently. “Before you can prevent something, you have to have a firm grip on what it is. That’s the case with psoriasis,” the dermatologist observed.