Fifty years ago, the National Psoriasis Foundation was born from the need to create a community for people living with psoriatic disease. NPF has funded groundbreaking research, advocated for better care and helped educate patients and doctors. But we’ve never forgotten where we came from, and we continue to draw our strength from all of you.
For this installment of our series, we talked to two women (and their mothers) about living with psoriatic disease and how volunteering with NPF shaped their lives.
Psoriasis is tough, but Keira Romanello is tougher. She was diagnosed with plaque psoriasis when she was only 4 years old. When kids made fun of her at school, she made a poster explaining psoriasis to share with her class.
Then there was the “earring battle.” Her doctor had advised her parents, Irena and Charles, to leave her earrings in so that her plaques wouldn’t spread and cover her earring holes. When her school said she couldn’t wear earrings in gym, her family mobilized. After lengthy negotiations, Romanello was permitted to keep her earrings in, but, she said, “I had to wear headgear like the wrestlers used. I didn’t like it at first, but that was how I got to play in gym.”
The struggle over Romanello’s earrings and other experiences made her parents realize how important it was to raise awareness about psoriatic disease. They learned about NPF from a dermatologist, and when they read about our first Capitol Hill Day in Psoriasis Advance, the Romanellos signed up.
In May 2004, Keira Romanello, age 7, became one of the youngest people ever to advocate before Congress — a story we covered in the January/February 2005 issue of the Advance.
The Romanellos, who lived in East Rutherford, New Jersey, met with their senator, the late Frank Lautenberg. “I remember how welcoming Sen. Lautenberg and the other representatives were, especially when they met Keira,” Irena Romanello recalled. “Also, I was so impressed that Keira actually spoke.” In our 2005 article, her mother said, “It’s scary to talk with people who you don’t know, but people responded to [Keira] because she was the only kid.”
The little girl advanced from making posters for her class to advocating again during Capitol Hill Day 2005. When she was 10, Romanello began participating in the Psoriasis Walks (now part of Team NPF) and other NPF events, including a night at Yankee Stadium in 2014.
“My mom got me to do the first walks, but after that I enjoyed them, and I looked forward to the walk every year,” Romanello said. “I had planned to do it in college as well, but with the course work and having a job, it was too much. I would love to be a part of the community again and get to meet new people with different stories about their psoriasis.”
Today, Romanello is 20 and studying at Massachuseets College of Pharmacy & Health Sciences in Boston, Massachusetts, in the Doctor of Pharmacy program. Her psoriasis inspired her career choice just as it inspired her volunteering. “I remember going to doctors when I was a child, then going to the pharmacies for the prescriptions. As I got older, I researched these drugs, and I found out I was interested in the subject,” she said.
“As parents, we always included her in her treatment,” Irena Romanello said. “We’d explain things to her and say, ‘If the doctors says this, we’ll try it for a while.’ As soon as she got old enough to go on the internet, she started researching her own treatments.”
“I hope to help other people with psoriasis,” Keira Romanello said. “I work in the pharmacy at a drugstore, and when people come in and say they think they have eczema or psoriasis, can I help them, I can say, ‘Yes!’”
Lara Wine Lee
For her ninth birthday, Lara Wine Lee didn’t get “normal kid” gifts — she got guttate psoriasis. The year was 1984, and “we knew nothing about psoriasis,” her mother, Blanche Wine, said of herself and her husband, Mark. They took their daughter to a series of dermatologists, who prescribed cortisone creams and tar baths that either had no effect or made things worse, she said.
They got a break with a referral to yet another dermatologist. He prescribed UVB light therapy, which helped. After she started therapy, a technician told the family about the National Psoriasis Foundation.
“NPF was so very present in our lives,” Blanche Wine said. “The newsletter was full of info, and we met so many people at the meetings. I can never repay them for their impact on my life and, subsequently, Lara’s.”
She volunteered with NPF for 10 years, beginning in the late 1980s. On behalf of NPF, she spoke to many groups about the impact of psoriasis on children, and she served a four-year term on the NPF Board of Directors. In 1994, Wine spoke before a congressional committee about the need for more funding for research — an event that was covered in the May/June 1994 issue of the Bulletin, the predecessor to Psoriasis Advance.
“My mother had no background in politics, advocacy, diplomacy or government relations,” Wine Lee said. “In those days, it was enough that she lived in D.C. and wanted to get involved.”
Unlike today’s Capitol Hill Day, when patients and NPF staff visit representatives in their offices, this was a mass hearing, and NPF shared the spotlight with other patient advocacy groups.
“I remember it vividly,” Wine Lee said. She was 11 at the time. “The room was full of people with various skin diseases and their families. The Congress [members] sat high up on a podium, looking down on you when you came forward to a little table to speak. My mother did all the talking; I just went along.”
Blanche Wine advocated before Congress three times alongside other groups. “My claim to fame is that once, I had to speak after Leonard Nimoy,” she said.
Wine Lee has continued her mother’s work. She’s been a member of our Advocacy and National Volunteer Leadership Conference committees, co-founded the Psoriasis Walk in Philadelphia and joined us four times for Capitol Hill Day.
At our Research Symposium in San Francisco in July 2015, she moderated a panel of experts in her official capacity as Lara Wine Lee, M.D., Ph.D. Today, she is a pediatric dermatology specialist at the Medical University of South Carolina Department of Dermatology & Dermatologic Surgery in Charleston, South Carolina.
The light therapy Wine Lee received as a child got her thinking about medicine. Fairly late in medical school, she discovered various specialties within dermatology, and she was particularly excited about pediatric dermatology. “I understood pediatric dermatology because I understood the impact of psoriasis on my own life,” she said. “If I ever strayed in my thinking, my personal experience drew me back.”
Blanche Wine learned early on the importance of being your own health advocate when one of Lara’s dermatologists was always in a rush. “I had to bar the door to get him to talk to us,” she recalled. “Every talk I ever gave at an NPF meeting, I told them, ‘Bar the door! Make them talk to you!’”
She’s proud of her daughter, especially because of “Lara’s reputation among her colleagues of being an ‘old-fashioned’ doctor — that is, someone who treats her patients and their parents as real people.”
Wine Lee is a dermatologist today largely because of her psoriasis, and she’s a volunteer because of her mother. “We really shared that,” Wine Lee said. “It was a bonding point for us. As she got older, and she saw I was ready, she passed it along to me.”
Note from the editor: The "Where are they now?" series launched here.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. See how far we’ve come with this timeline of NPF’s history. But there’s still plenty to do, and we can’t do it without you! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.