Freestyle Staff Writer [email protected]
Every teenager understands the obstacles life can sometimes throw at you. Clarissa Dempsey, an 18-year-old Elizabethtown High School 2014 graduate, has been thrown a few more curveballs than most.
Clarissa lives with psoriasis, a noncontagious autoimmune disease that covers her skin with painful and itchy red patches, and psoriatic arthritis, which affects the joints and connective tissues and can cause debilitating pain and inflammation. Clarissa was diagnosed with psoriasis at age 4 and psoriatic arthritis at age 13. Psoriatic arthritis affects up to 30 percent of people who have psoriasis, but most are diagnosed between ages 30 and 50.
Growing up with psoriasis was never easy, Clarissa says, and not simply because of the physical effects. Classmates, friends and even adults often reacted insensitively because they did not understand her disease, she says.
"People are in so much physical pain. It's not just a rash; it can cover 80 percent of your body at once, and it can be a 'skin-on- fire' sensation, where your skin feels like it's burning," says Clarissa.
Janine Dempsey, Clarissa's mother, says Clarissa was asked to leave the pool because people mistakenly believed she was contagious, and yelled at by a student teacher for scratching at her skin, which is a natural mechanism for coping with the disease.
"Once my friend told me she could play connect-the-dots with my stomach, and I got called 'Dalmatian Girl,' " Clarissa says.
Her later diagnosis of psoriatic arthritis led to more ignorance from those around her.
"My arthritis developed in my back, so I couldn't sit or stand and couldn't go to school for two weeks. This was in seventh grade, and I couldn't carry anything, so I had a rolling backpack. Kids would kick it in the hall and even teachers would make fun of it, and it would just get destroyed, so I went through four in two years," Clarissa says. "I was called weak, stupid and overdramatic, and I felt made fun of by everybody, including the principal."
"They thought they were being 'cute,' but they didn't know how it affected her," Janine says.
Clarissa's arthritis was hard to control with medication because people's symptoms and reactions to different medicines can greatly vary.
"Her first medication didn't help with pain and fatigue, only the inflammation, so she would sleep for three hours when she got home because of pushing through school," Janine says. "We had a wake-up call freshman year, when her medicine was nationally backordered for three months, and we realized how bad she was when she was not being treated."
Finding the right medicine profoundly improved Clarissa's health and life at school.
"By the end of 10th grade, I was finally able to carry a normal backpack, and it was life-changing, though it doesn't seem like it would be," she says.
The lack of knowledge and understanding of psoriasis and the difficulties involved with finding effective treatments motivated the Dempseys to get involved with the National Psoriasis Foundation, which frequently lobbies Congress to increase public awareness of psoriasis and psoriatic arthritis and obtain increased federal support to research and find a cure.
Clarissa decided to use her own experiences to work to benefit others in the psoriasis community. This March she traveled to Washington, D.C., with the foundation for the third time. The group of patients, patient advocates and medical professionals pushed Congress to provide funds for a registry of all Americans living with psoriasis, and to support a bill that would lower the costs of necessary medications to treat psoriasis and other illnesses that require expensive medicines.
Thomas Dempsey, Clarissa's father, says, "This bill is for all people with medical prescriptions and it could affect everyone," as the bill attempts to limit insurance companies' ability to raise the costs to patients of expensive, vital medications.
The reach of the bill for which Clarissa and the foundation are lobbying for is truly immense. Psoriasis is the most common autoimmune disease in the country, estimated to affect 7.5 million Americans, and roughly 13,250 Lancaster County residents. But the true numbers aren't known, so creating a national registry is a major goal of the NPF.
"We want the registry because the data isn't out there. We don't know how many people in the U.S. have it, and finding out the numbers will help with finding a cure," Janine says.
Psoriasis is a disease that unfortunately has an image problem, says Clarissa, as many people don't understand its effects, and some are still not known because of a lack of research.
"Psoriasis doesn't have the same 'wow' power as cancer or diabetes. They think it's just a skin disease, but it's more. It could be a gateway to other diseases," says Thomas.
Janine recounts an eye-opening moment from the D.C. conference when they learned about new research that connects psoriasis to other diseases later in life.
"... Many people with psoriasis are developing cardiovascular diseases later in life," she says. "It's a relatively new study, and we were sitting with these two teenagers who have psoriasis, and the doctor is talking about all the medical issues that are coming for them."
"It was scary. The odds are not in my favor," says Clarissa. "I knew about the connections between what I have and diabetes and Crohn's, but not heart disease. And all those diseases run in my family."
The Dempseys have learned that the personal stories of those living with psoriasis are invaluable in attempts to get Congress to support the foundation's goals.
"The director of (a roundtable) discussion (in D.C.) thanked us and told us that these clinicians don't know the information, and they need to hear the personal stories of diagnosis and treatment," says Janine. "He told us we helped more than we thought."
When the Dempseys go to D.C. with the NPF, they often speak to Congressional aides to Pennsylvania's state representatives. Clarissa has seen an aide for U.S. Rep. Joe Pitts every time she's come to D.C., and it makes a real difference in how their objectives are received, she says.
"It's like chatting with an old friend, and it makes it very personal," Clarissa says. "Being friends makes it a greater chance that they'll take it to the Congressperson and get it done."
The Dempseys' involvement with the foundation doesn't end with trips to Congress. Clarissa and Janine have acted as youth and parent mentors within the organization.
"You can feel very isolated with a disease like this, and meeting others is very helpful," Janine says. "You can email other parents who are in the same boat, because there is some tendency to feel like your child is a guinea pig because of the trial-and-error treatment."
"With starting college, I was worried about giving myself my shot, and I Facebooked a friend and mentor who gave me tips on how to do it, and it was the biggest help," Clarissa says. "She didn't make fun of me because she'd gone through the same things."
Since the Dempseys benefitted from the assistance of other parents, helping others is incredibly important to them.
"We had no support until we got involved in the NPF. If I can help another parent, the most important thing is to be there for someone else," Janine says.
"Finding a cure is very important, because I don't want kids to go through what I went through. It's not fun," Clarissa says. "People want to cover it up and wear long sleeves, but hiding it is not a good thing, because no one will know about it."
Some celebrities who are diagnosed with psoriasis have responded with shame rather than acceptance. According to Clarissa, that very negative attention on the disease is not good for kids growing up with psoriasis. When Kim Kardashian was diagnosed, magazines had headlines with "I hate my skin" plastered across them.
"Seeing that reaction hurt me," Clarissa says. "Seeing people cover themselves and not being who they are hurts. People should be themselves and be comfortable with it."
Clarissa's life has been shaped by her psoriasis, but thankfully not always in a negative way.
"I've watched my daughter as she's grown up as a person who has handled adversity and handled people making negative comments, and educated (them) politely as to what psoriasis is and how it affects people," Thomas says. "It feels very good that she's able to handle herself."
"I don't regret my life at all. It's made me a strong person," Clarissa says.
Clarissa will head to Lebanon Valley College in the fall to major in music education. She says she will continue to work with the foundation in a variety of ways, and she will take the strength that she has gained in dealing with and advocating for psoriasis with her.
Psoriasis has shaped and will continue to shape Clarissa's life as she faces the future.
Credit: Chloe Vassot; 17
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