News and Events News

New Connections, New Hope

First posted Aug. 12, 2003
Last updated Sept. 2, 2003

More than 300 participants connected with others, learned new information and gained support recently at the National Psoriasis Foundation 2003 National Conference. The conference, held in Schaumburg, Ill., from August 8-10, featured workshops and general sessions on treatments and coping with psoriasis and psoriatic arthritis. A rousing social event on Saturday�complete with a drum circle and Brazilian dancers�proved how easily the psoriasis and psoriatic arthritis community can "make some noise" to raise awareness of the disease.

Wear Your Support T-shirts from the 2003 National Conference are available for $5.00. Call or e-mail the Member Services Coordinator at 800.723.9166 to purchase.

The conference started off on Friday with registration and concurrent preconference workshops on the basics of psoriasis and psoriatic arthritis, discrimination and insurance challenges, and volunteering. Members of the online psoriasis community held a "meet and greet," and support group leaders got together to discuss effective techniques.

Following the preconference workshops, the exhibit hall opened its figurative doors in a white canopy outside the hotel. Aside from the National Psoriasis Foundation exhibit, nearly 24 company exhibits offered information on topicals, phototherapy and systemics to interested registrants.

On Saturday morning, Leslie Holsinger, Ph.D., and Chairman of the National Psoriasis Foundation Board of Trustees, and Gail Zimmerman, President and CEO of the Psoriasis Foundation, kicked off the conference's general session with thanks to participants for their support.

Opening Ceremonies Click to enlarge more photos

"We depend on your support to help keep us going," Zimmerman said. She explained the Foundation's goals of supporting research, supporting insurance and discrimination issues, and raising awareness of safe treatments.

Presentations stress the emotional impact
Leslie Kronish followed, with a moving presentation entitled "If My Psoriasis Could Talk." After years of hiding her psoriasis and feeling shameful about its appearance, Kronish realized that her disease would tell her "there are people who understand, and it's OK to feel shy or uncomfortable. Talk about me, and find other people who know who I am."

Next, David Roche spoke about "living with a physical difference" in what was a powerful testament to perseverance and emotional fortitude. Roche has a facial disfigurement that turned him into a "fascinoma" to interested yet often impersonal physicians and specialists. The numerous operations and lesions scarred his face and damaged his mouth, and subjected him to many curious stares and sometimes cruel remarks throughout his life.

Roche eventually coped with his social stigma through humor and by talking openly to people. "I lived in a world of denial. My family believed that if you ignore it, maybe people won't notice. That's why I'm happy to be here, and to see the way that you're taking control of quality of life issues."

The spirit of Roche's presentation carried over into the afternoon workshop, "Psoriasis: How It Makes You Feel," led by Steven Rapp, Ph.D., a professor of psychiatry and behavioral medicine at Wake Forest University School of Medicine. His goal was that "as many people as possible understand how to manage their quality of life" after attending the workshop.

He acknowledged that psoriasis "affects your relationship to yourself."

"It affects your relationship to other people, and it affects your emotional and physical well-being, your pursuit of pleasure and your work activities," Rapp said.

"I had a fabulous time. I learned A LOT, the sessions were informational, especially the ones on biologics." Bella -- post on message boards

One woman in the workshop described how the head of human resources and the CEO of her company demanded a letter from her doctor stating that her psoriasis wasn't contagious. Her doctor complied, but added in the letter that "psoriasis isn't contagious, but stupidity is."

"I have devoured all the Psoriasis Foundation materials over the years; but I learned a lot more today. In these times, we patients have to become self-educated ... and, as you made clear today, we also must self-fund and self-advocate. Thanks, again," Linda Hutson, Member

Rapp followed up her story by stating "the ignorance isn't a crime. It's human nature to be curious. The art is in figuring out what the situation is�if the question is being asked benignly or out of malice." The other workshops, Parenting a Child with Psoriasis, Supporting the Patient You Care About, and Relationships and Intimacy, all touched on the deeply personal impact of psoriasis.

Medical experts advise proper treatment
The workshops were followed by a Webcast through HealthTalk Interactive, featuring Kenneth Gordon, M.D., Steven Feldman, M.D., Ph.D., and Mark Lebwohl, M.D. The three doctors presented data on new treatments, including topicals and biologics, and answered questions from an audience that included more than 200 people online and listening over phone lines. Please click here for a replay of the Webcast. This link takes you off the National Psoriasis Foundation Web site. We are not responsible for the content of any linked site.

Medical professionals led workshops throughout the afternoon on biologic treatments, phototherapy and lasers, systemic medications and topical treatments. Dr. Lebwohl offered numerous tips for using the systemic treatment methotrexate, including being cautious about using other medications, such as antibiotics and aspirin, or consuming certain foods or drinks while on the treatment. "I don't allow my patients even one drink of alcohol a week" while on it because of the interactions, he said.

The phototherapy workshop, led by Charlene Berger, R.N., with Psoriasis Foundation patient education support specialist Mary Hebert, offered advice on effective light treatment. Berger explained the process behind light therapy, including the minimal erythemic dose (MED) that allows the healthcare professional to determine how much light to give during each treatment: "We treat at the minimum amount of light, then work up until the patient is pink, before sunburn."

Social event and workshops support emotional release

After a day of absorbing patient insights and medical advice, about 170 conference participants let their hair down with the evening social event, "Let's Make Some Noise." After enjoying Italian, Asian and Mexican cuisine and listening to Chicago blues, participants took part in a drum circle designed to help them rouse their spirits during the conference. Colorful Brazilian dancers encouraged participants to dance, thus turning the social event into a festive celebration of the power of music and movement.

Saturday social event Click to enlarge more photos

Sunday morning brought sunshine and smiles to the faces of participants who'd connected with old and new friends throughout the weekend. The day was spent in workshops focused on proactively coping with psoriasis and psoriatic arthritis, such as Tai Chi for Psoriatic Arthritis, Giving Psoriasis a Voice Through Writing, Pregnancy and Psoriasis, It Works for Me, Being a Powerful Patient, Art Therapy and Supporting Each Other: Couples' Discussion.

Facilitator Stanton Alleyne guided participants through low-impact Tai Chi exercises that promoted balance and strengthened stressed joints. Tai Chi is a form of martial art that focuses on calming and balancing the body and mind. "It's easy to be fast but when you slow down you realize how hard it is," said Alleyne, as about nearly 35 people concentrated on single graceful movements.

In It Works for Me, about 30 participants shared their tips for treating psoriasis and psoriatic arthritis, ranging from moisturizing with Bag Balm to coping with depression. One insightful participant said, "don't focus on what you can't do anymore, but what you can do. All of us can get down, but we can bring ourselves back up again without even realizing it."

Responding to participants' questions about following certain diets touted to control psoriasis, Mary Hebert, Psoriasis Foundation patient education support specialist, stressed that "what you eat can affect your psoriasis, but it's not the end-all thing. Exercise and diet can benefit your psoriasis, but it's not your fault if you have meat and then you have a flare-up. It's your psoriasis--not you--that's causing it."

The conference ended with a question and answer session with Drs. Feldman and Lebwohl. Responding to a question about joint fusions, for example, Lebwohl said, "I'd treat it medically first. With surgery, you're able to treat the pain, but treat the disease first."

The sensible advice was a fitting end for the conference, which wrapped up with hugs, smiles and promises to meet again at next year's conference.

The Member magazine Psoriasis Advance also will have more information with pictures from the Youth Track in the September/October issue, due out in early September.