Highlighted participants
From September/October 2007 Psoriasis Advance
It's time to find a cure, and we need you!
In order to understand the genetics of psoriasis, scientists need access to genetic material in the form of DNA samples. To that end, we've launched the National Psoriasis Victor Henschel BioBank, with a goal of collecting 2,000 genetic samples to help researchers find the genes linked to psoriasis.
This initiative has the potential to greatly advance psoriasis research—but building the collection of samples depends on you, your friends and your family members.
We are currently seeking individuals with psoriasis and/or psoriatic arthritis (cases) and those without (controls) to take part in the study. To reach our goal of 2,000 samples by the end of 2007, we need your participation!
We profiled seven individuals who have already donated their blood samples to the BioBank. Read their inspiring stories, then visit www.psoriasis.org/biobank and complete a registration form to see if you qualify. Or, contact us at biobank@psoriasis.org, or 800.723.9166.
Tony Acciari |
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Tony Acciari
When you ask Tony Acciari, 35, about his psoriasis, the first thing he says is, “I like to tell people I was born with it.” That's because in the 25 years since plaque psoriasis first appeared on his knees and elbows, Tony has studied the disease; he understands that his psoriasis wasn't something he got randomly, but rather something passed on to him through genes.
Tony educates the people who refuse to let him swim at the local pool, turn him away from the water park and give him hard stares at the gym. “I say, ‘It's not contagious; it doesn't look pretty, but you can't catch it from me.’” Tony also uses his experience with psoriasis to lobby his U.S. representative from Minnesota for better prescription coverage, a mission that's become more important to him since he went on disability because of his psoriasis and newly developing psoriatic arthritis.
Tony was our first BioBank participant, and he would like to see more people registering to participate. “If it's going to help someone else, let's do it, let's give it a chance!” he says.
Marti Hinkle |
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Marti Hinkle
Marti Hinkle, 39, was diagnosed with psoriasis about a year ago. She considers herself fortunate, with less than 1 percent body surface area coverage—still, it's on her face and scalp, which can be very embarrassing, she says.
While she describes her own psoriasis as a minor inconvenience, she realized what a nightmare the disease can be when her 6-year-old daughter developed psoriasis from head to toe. Marti's daughter suffers daily with pain, itching, and judgment and stares from the public.
For Marti, her daughter is the inspiration and motivation for participating in the BioBank. “We hope and pray the BioBank will prevent her and future generations from having to suffer from this wicked disease,” she says.
She added: “If you are considering donating to the BioBank, please keep in mind the millions of people's lives that you could be changing for a very small commitment of your time and good will.”
Sherman Logan, Jr. |
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Sherman Logan, Jr.
Sherman Logan, Jr., 49, was diagnosed with psoriasis nearly 20 years ago, when he was busy raising his family. He covers up his arms and legs during severe outbreaks (which can be difficult during hot Virginia summers), but overall, he says the adverse effects on his life due to psoriasis have been minimal. That's probably because with five children he didn't have time to let the disease slow him down—even though it sometimes covered up to 85 percent of his body.
Sherman has faith that a cure will be found, hopefully in his lifetime; that's why he decided to participate in the BioBank. The process was easy, and Sherman enjoys knowing that his DNA samples could possibly help find a cure for psoriasis.
As a psoriasis patient, Sherman feels especially compelled to do his part to contribute to research. “A cure,” he says, “will not be possible without the support and participation of those who have the disease.”
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Richard Mengelkoch |
Richard Mengelkoch
Like many others, Richard Mengelkoch, 53, has experienced his share of cruel perceptions, mean comments and rude stares from people who are uneducated about psoriasis. He learned long ago to ignore cruelty, and now answers sincere questions about his psoriasis and psoriatic arthritis with pleasure, seeing it as a way to spread awareness and understanding.
Richard, of Union City, Calif., has had plaque psoriasis for 34 years and psoriatic arthritis for 17. Over the years, he tried “what seems like every over-the-counter and prescription drug available.” He even participated in medical trials in his search to find a treatment that works. Overall, though, he saw very few positive results.
Throughout his years of struggle, Richard always held hope for a cure. Participation in the BioBank, he adds, was one of the easiest things he's ever done: “Five minutes to draw a small amount of blood and a swab of my cheek, all for the hope of a lifetime of change!”
He urges others to take the same initiative and register for the BioBank. “Be proactive and share of yourself so that others may benefit,” he says.
Carla Perovich |
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Carla Perovich
Carla Perovich, 28, has had psoriasis since at least the sixth grade, and psoriatic arthritis since about the age of 17. She went years without being diagnosed, until she was referred to a dermatologist when she was 22. By then, she had already found the National Psoriasis Foundation.
When Carla heard about the BioBank through a Psoriasis Foundation e-newsletter, she was surprised to find that she was eligible to participate. As a resident of Oklahoma at the time, she wasn't near any major research facilities, which is a requirement for many studies that require a sample donation. When she learned she could simply mail in her DNA sample from Oklahoma, she jumped at the chance.
Carla supports finding a cure for any and all diseases. Besides psoriasis, cancer and heart disease run in her family. She's participating in the BioBank because she feels it's necessary to take action.
“We have to help each other to find a cure,” she says. “I couldn't expect there to be a cure if I wasn't willing to help.”
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Ben Sorgi |
Ben Sorgi
Ben Sorgi's skin is clear now, but in the past his psoriasis covered up to 45 percent of his body. The pain and discomfort have affected him, disturbing his sleep and his sense of well-being.
Even with clear skin, he has other concerns for his health; for one, he has developed psoriatic arthritis, and he is concerned about potential long-term effects of medications he is taking. The constant treatments are time-consuming, which can be a problem—especially during the school year.
It was easy for Ben to take action for a cure by donating his DNA to the National Psoriasis Victor Henschel BioBank.
“There is nothing to lose and everything to be gained by participating in the BioBank,” he says. “I can't imagine why anyone wouldn't!”
Leigh Z.
For Leigh Z. of San Francisco, Calif., participating in the National Psoriasis Victor Henschel BioBank was a very personal decision, one made with her future children in mind. She says if she were to have children, she would give anything to save them from the teasing, the difficult and time-consuming treatments, and the low self-esteem that marked her childhood due to psoriasis. The BioBank has provided an opportunity for Leigh to contribute to finding a cure.
“Our future generations are depending on the research we do today,” says Leigh. “If the BioBank is successful, then my children and grandchildren may not have to suffer the disease the way I did.” About the process of becoming a BioBank participant, she adds, “It's so easy, there's no reason not to do it!”
Leigh developed psoriasis at the age of 5, and today, at 30, she has learned to live with psoriasis. Low self-esteem has been replaced by a unique and hopeful perspective. She has a supportive husband, family and circle of friends. And her psoriasis is fairly stable, thanks to a coal tar lotion that's worked for Leigh since 1999, when she tried it as a last resort.
Through the BioBank, she's doing her part to spare others the burden of the disease. “Instead of cursing fate for giving me this awful disease, I am thankful and grateful that I don't have something totally debilitating or fatal. Now I am just anxious for a cure—not necessarily for me, but definitely for future generations!”
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