Grammy Award-winning singer advocates for research into disease afflicting 7.5 million Americans
Grammy Award-winning artist LeAnn Rimes shared her personal story on Capitol Hill today about growing up with psoriasis, and she encouraged lawmakers to support much-needed research and enact legislation to address this complex, autoimmune disease.
“I was first diagnosed with psoriasis at age 2 and throughout my childhood, my condition worsened to the extent that, at one point, I was covered with lesions over 80 percent of my body,” Rimes said. “I know what it’s like to worry about treatments and to be teased by peers. I want to support efforts to find a cure so others don’t have to experience the negative effects of psoriasis.”
Psoriasis is the most prevalent autoimmune disease in the country, affecting as many as 7.5 million Americans. Psoriasis is a noncontagious, chronic, inflammatory, painful, disfiguring and disabling disease for which there is no cure.
“As I entered the public spotlight, I went to great lengths to hide my psoriasis,” she explained. “Although the physical pain of living with psoriasis has been difficult at times, it has been much more of an emotional struggle. The physical pain doesn’t even compare to the pain of embarrassment and fear that someone is going to think you’re not a normal person.”
In addition to the skin condition, psoriasis frequently occurs with a range of other health concerns including Crohn’s disease, diabetes, hypertension, heart attack, cardiovascular disease, liver disease, metabolic syndrome and obesity.
Rimes was accompanied on the Hill by 14-year-old Alyssa Krafsur, from El Paso, Texas. Krafsur struggles with severe psoriasis and psoriatic arthritis, which occurs in up to 30 percent of people with psoriasis and causes pain, stiffness and swelling in and around the joints. Psoriatic arthritis can be debilitating if left untreated.
“When I was diagnosed two years ago with psoriasis, my doctor gave me a tube of cream to treat the few lesions on my elbows and knees and sent me home,” Krafsur said. “Within a few months, 50 percent of my body was covered with itchy, red and bleeding sores. The pain was so overwhelming, sometimes I slept on the floor because the cool tiles were my only relief.”
Krafsur was a typical preteen prior to her diagnosis. She excelled at school, had lots of friends and was involved in activities such as soccer and ballet. As the lesions proliferated, her peers teased her and left her to eat lunch alone. Her grades started to fall because she couldn’t concentrate due to the burning and itch of her psoriasis and she could no longer participate in extracurricular activities.
Fortunately, Krafsur has found a treatment regimen that works for her and her life is returning to normal. Because of her experience with these disabling diseases, she is dedicated to finding a cure for psoriasis and psoriatic arthritis through the creation of Alyssa’s Fund, which was launched today in D.C. Alyssa’s Fund is a campaign in partnership with the National Psoriasis Foundation that aims to raise $1 million to support immunology research and, ultimately, find a cure for psoriatic diseases.
On Capitol Hill, Rimes called for $1.5 million in funding to create a national psoriasis patient registry and encouraged members of Congress to co-sponsor the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act, the only comprehensive, psoriasis legislation. This bill calls on the National Institutes of Health to expand biomedical research on psoriatic diseases and asks the Centers for Disease Control and Prevention to establish a patient registry to track the impact of the disease. Additionally, it calls for a federal summit on psoriasis and a formal report by the Institutes of Medicine on access to care.
“No child should have to go through what Alyssa and I, and millions of others have experienced,” said Rimes. “This research can help bring an end to the physical and emotional pain caused by psoriasis and psoriatic arthritis.”
“Over the past decade, the National Institutes of Health has spent less than $1 per person with psoriasis per year,” said Randy Beranek, president and CEO of the National Psoriasis Foundation. “It’s important Congress understand that psoriasis is a serious disease that needs a cure.”
Total direct and indirect health care costs of psoriasis for patients are calculated at $11.25 billion annually with work loss accounting for 40 percent of the cost burden. More than half of people with psoriasis miss an average of 26 days of work per year due to complications from the disease.
Psoriasis usually first strikes between ages 15 to 25 and lasts a lifetime; over time some treatments that were working may stop being effective. The same treatments do not work for every patient and many can have serious adverse side effects that prevent people from functioning normally.
For more information, or to urge bill sponsorship by members of Congress, go to www.psoriasis.org/advocacy. To learn more about Alyssa’s Fund, visit www.psoriasis.org/difference/alyssas_fund.php.
Source: National Psoriasis Foundation
