Docstoc

Early diagnosis Rest and reduce

Document Sample
Early diagnosis Rest and reduce Powered By Docstoc
					PSORIASIS
Coping with chronic disease
page 10

ADVANCE
Volume 6 : Number 1 March/April 2008

A magazine connecting the psoriasis and psoriatic arthritis community

Web sites for rating your doctor
page 27

Sound strategies for sound sleep
page 7

g r livin tion fo thritis p rescri atic ar Your p h psori ell wit w

National conference: Meet us in Orlando!
page 16

SPECIAL PSORIATIC ARTHRITIS ISSUE

diagnosis Early stress reduce Rest and xercise E thy diet Heal orders doctor’s Follow
THI SCR S PRE IPTIO N FILL IS RE ABLE

Connect. Control. Cure.

Pam Field, MBA Acting President and CEO

Inside the Foundation
By now you may have heard about the study released last December showing that people with severe psoriasis are likely to die sooner than those who don’t have the disease. (See page 3.) Other studies have shown that psoriasis is linked with heart disease, diabetes, obesity, liver disease and other risk factors. These studies present valid concerns for people with psoriasis and their families. Yet there are positive messages the psoriasis community can take from these results. For one thing, the studies are finally putting psoriasis on the map as a serious disease that deserves serious attention. Just as significant, they emphasize how especially important it is for people with psoriasis to embrace a healthy lifestyle—to make healthy living a priority. If changing your lifestyle was your resolution for the new year and you’re finding it hard to follow through, don’t give up! Remember, you don’t have to change overnight. In our January/February member newsletter, Psoriasis skINSIGHTS, we suggested making “yearround resolutions” that give you a more realistic timeline to make these changes. Try making small changes daily. Each day, eat fewer calories. Do a little more walking. Take the stairs instead of the elevator. These kinds of changes will add up to better overall health. The National Psoriasis Foundation is here to support you in several ways. We’ll continue to offer you information and ideas for making healthful lifestyle changes. We’ll keep encouraging you to see your doctor for preventative screenings and a comprehensive exam. And we’ll continue to raise awareness and push for more research funding. You can help us by getting involved with such initiatives as the National Psoriasis Victor Henschel BioBank and our National Psoriasis Walk for Awareness program, and by supporting our legislation in Congress.Visit www.psoriasis.org to learn about these efforts and join us in our fight for better treatments and, ultimately, a cure.

Pam Field Acting President and Chief Executive Officer
Our mission is to improve the quality of life of people who have psoriasis and psoriatic arthritis. Through education and advocacy, we promote awareness and understanding, ensure access to treatment and support research that will lead to effective management and, ultimately, a cure.

ADVA NC E
Volume 6 : Number 1 March/April 2008

PSORIASIS

FEATURES

Contents
Taking charge of chronic disease

NATIONAL PSORIASIS FOUNDATION 6600 SW 92nd Avenue, Suite 300 Portland, Oregon 97223-7195 USA Tel: 503.244.7404, 800.723.9166 Fax: 503.245.0626 E-mail: getinfo@psoriasis.org Web site: www.psoriasis.org Executives Dale A. White Chairman, Board of Trustees Poolesville, Md. Pam Field, MBA Acting President and CEO Portland, Ore. Editorial Staff Sharon DeBusk, Editor/Writer Mary Bellotti, Editor/Writer Carrie Geygan, Graphic Design Manager Tina Rouhoff, Graphics Production Assistant Jackie Groah, Advertising Sales Contributing Writers Helen Connor Sara McCall Medical Editors Mark Lebwohl, M.D. Mount Sinai School of Medicine New York, N.Y. Daniel E. Fohrman, M.D. Bend Memorial Clinic Bend, Ore.

page
Good night, sleep tight

10

page

7
4 7 9 10 13 16 22 25 27
®

ARTICLES
Getting a grip on psoriatic arthritis Strategies for a good night’s sleep A little exercise goes a long way Coping with chronic disease National Psoriasis Walk for Awareness National Psoriasis Foundation 2008 National Conference The Fair Shake campaign for psoriasis Highlights from the American Academy of Dermatology meeting Rating your doctor online

COLUMNS
Take Action Front Porch Dr. Tell Me 2 3 19 It Works for Me Psoriasis Support Groups Consumer Corner 29 30 32

NATIONAl HEAlTH INFORmATION AWARD: Psoriasis Advance received a merit award in September 2006 from the Health Information Resource Center.

The National Psoriasis Foundation encourages members to increase awareness about psoriasis and psoriatic arthritis by educating the public on these diseases. Members can support people who have psoriasis by asking their physicians and health care providers to make patients aware of the Psoriasis Foundation’s educational and support services.

GOlD TRIANGlE: The National Psoriasis Foundation Psoriasis Advance received a Gold Triangle Award in July 2005 from the American Academy of Dermatology.
Cover illustration: Psoriatic arthritis can be controlled with the right treatment, especially if it’s caught early. Starting on page 4 of this special issue that focuses on psoriatic arthritis, you’ll find features about how to live well with this lifelong inflammatory disease of joints and tissues. Photo illustration by Carrie Geygan; photo used with permission from istockphoto.com.

The Psoriasis Advance is published by the National Psoriasis Foundation. All rights reserved © 2008, National Psoriasis Foundation. The contents of the Psoriasis Advance cannot be reproduced or copied without written permission of the National Psoriasis Foundation, United States of America. Opinions expressed in the Psoriasis Advance do not necessarily reflect the views of the National Psoriasis Foundation. The National Psoriasis Foundation does not test, recommend or endorse products, medications or therapies for the treatment of psoriasis or psoriatic arthritis. The Psoriasis Advance is published as an informational service and is not intended to replace the counsel of a physician. Advertising policy: Ads are accepted for publication if they are relevant to people with psoriasis and psoriatic arthritis and if they meet certain standards. The National Psoriasis Foundation, a charitable 501(c)(3) organization, depends on your tax-deductible donations to support the millions of people diagnosed with psoriasis and/or psoriatic arthritis. The Psoriasis Foundation is governed by a volunteer Board of Trustees and is advised on medical issues by a volunteer Medical Board. For more information, or to obtain a copy of the Foundation’s Annual Report, call 800.723.9166. ISSN March/April 1543-429X

2008

1

VOLUNTEER BOARD OF TRUSTEES Dale A. White Chairman Poolesville, Md. Richard Seiden Vice Chairman Los Angeles, Calif. Benjamin Isenberg Secretary Lake Oswego, Ore. Jana R. Wessels Treasurer Iowa City, Iowa Daniel Farrington Bethesda, Md. Kathleen L. Gallant Pittsburgh, Pa. Lawrence Green, M.D. Rockville, Md. Donald Grilli Cohasset, Mass. Krista Kellogg Miami, Fla. Mark S. Lillie Chicago, Ill. ex officio Pam Field, MBA Acting President and CEO Portland, Ore.

Take Action

Ways to get involved with the National Psoriasis Foundation

Join the Fair Shake for Psoriasis Campaign! Help the Foundation work with elected officials to boost federal support for a cure and for improved access to care. To learn more visit www.psoriasis.org/advocacy/action.

Win a trip to the Blue Lagoon spa! Any Walk for Awareness participant who raises $500 will be entered in a contest to win a trip to the exotic Blue Lagoon spa in Iceland. For this year’s walk schedule, see page 13. For more details about the spa drawing, see page 24.

VOLUNTEER MEDICAL BOARD
Mark Lebwohl, M.D. Chairman New York, N.Y. Andrew Blauvelt, M.D. Portland, Ore. Joel Gelfand, M.D., MSCE Philadelphia, Pa. Dafna Gladman, M.D., FRCPC Toronto, Ont. Kenneth B. Gordon, M.D. Skokie, Ill. Alice Gottlieb, M.D., Ph.D. Boston, Mass. Sylvia Hsu, M.D. Houston, Texas Robert E. Kalb, M.D. Buffalo, N.Y. Alexa Boer Kimball, M.D., MPH Boston, Mass. Neil J. Korman, M.D., Ph.D. Cleveland, Ohio Gerald G. Krueger, M.D. Chairman emeritus Salt Lake City, Utah Craig Leonardi, M.D. St. Louis, Mo. Philip Mease, M.D. Seattle, Wash. Warwick L. Morison, M.D. Lutherville, Md. Christopher Ritchlin, M.D. Rochester, N.Y. Stephen Stone, M.D. Springfield, Ill. Bruce Strober, M.D., Ph.D. New York, N.Y. Abby Van Voorhees, M.D. Philadelphia, Pa. Gerald D. Weinstein, M.D. Chairman emeritus Irvine, Calif. Melodie Young, ARNP Dallas, Texas

For more information on any of these events, go to www.psoriasis.org/events.

Photo used with permission from wdwnews.com

Save the date: Aug. 15-16, 2008 The National Psoriasis Foundation® 2008 National Conference will be held at the Buena Vista Palace Hotel & Spa in the Walt Disney World® Resort in Orlando, Fla. See details on pages 16-17.

National Volunteer Week is April 28-May 3, 2008 It has been said that teamwork allows common people to attain uncommon results, and we recognize that National Psoriasis Foundation volunteers allow us to reach more people and achieve greater goals. Heartfelt thanks to our invaluable volunteers who make our work possible!

2

National Psoriasis Foundation® PSORIASIS ADVANCE

Front Porch
SEVERE PSORIASIS LINkED TO INCREASED RISk OF DEATH

News affecting our community

ENBREL HELPS kIDS WITH PSORIASIS

A

study published in the Archives of Dermatology in December 2007 showed that the risk of dying increased by 50 percent among patients with severe psoriasis compared with people who don’t have the disease. Mild psoriasis was not associated in the study with an increased risk of death. Conducted by Joel M. Gelfand, M.D., MSCE, and colleagues at the University of Pennsylvania School of Medicine, the study found that patients with severe psoriasis died an average of four years earlier than patients without the disease. The study tracked patients in the United Kingdom from 1987 to 2002. Researchers don’t know why patients with severe psoriasis have an increased risk of death, and research is ongoing, said Dr. Gelfand, a member of the National Psoriasis Foundation Medical Board. “In the meantime, patients suffering with severe psoriasis are encouraged to lead a healthy lifestyle and to see their physicians for preventative health screenings and treatments as necessary,” he said.

T

he prescription drug Enbrel (etanercept), prescribed to treat adults with psoriasis, is effective for treating children who have the disease, says a study published in the January New England Journal of Medicine.

For the study, 106 randomized patients between ages 4 and 17 were given Enbrel; 105 pediatric patients were randomized to receive the placebo. At week 12, 57 percent of the patients taking Enbrel showed 75 percent or greater improvement in their disease, compared with 11 percent of those who received the placebo. “This is very promising news for children with psoriasis, a vulnerable and underserved population,” said Pam Field, acting president and CEO, National Psoriasis Foundation. Amgen and Wyeth Pharmaceuticals, the drug’s maker, is seeking U.S. Food and Drug Administration (FDA) approval to prescribe Enbrel for children. The company and researchers at Northwestern University School of Medicine in Chicago conducted the study.

HUMIRA Ok’D FOR PLAqUE PSORIASIS

T

he U.S. Food and Drug Administration (FDA) has approved the biologic drug Humira (adalimumab) for treating adult patients with moderate-to-severe chronic plaque psoriasis. Since 2005, Humira—made by Abbott Laboratories—has been FDA-approved for treating psoriatic arthritis, which causes pain, stiffness and swelling in and around the joints.

The approval is based on two pivotal trials showing that nearly three out of four patients achieved 75 percent clearance or better at week 16 of treatment. “The approval of Humira is excellent news for patients suffering from psoriasis,” said Alan Menter, M.D., chairman, division of dermatology, Baylor University Medical Center, Dallas. “It offers dermatologists an important new therapeutic option that has been shown to help alleviate a range of psoriasis signs and symptoms.”

March/April 2008

3

Living well with psoriatic arthritis

You can control this lifelong disease
By Mary Bellotti

DAVID LYoN’S PSoRIAtIC ARtHRItIS BEGAN WItH AN INFLAMED KNEE and disfiguration in his hands. The Bend, Ore., chemist was in such pain, he could barely walk upstairs. The low point, he says, was spending an Oregon Coast vacation “just sitting,” unable to take beach walks. A rheumatologist finally determined that lyon had psoriatic arthritis as well as psoriasis, which he had developed more than five years before. Psoriatic arthritis is a lifelong, inflammatory disease of the joints and connective tissues that is directly associated with psoriasis, as lyon learned. And though it took nearly a year before doctors found the right treatment for him—he takes the biologic drug Humira—both conditions are now under control. “I’m doing very well with it now,” lyon says. lyon’s experience is instructive for anyone new to psoriatic arthritis—for someone just diagnosed or for those who have a relative or friend with the disease. As lyon discovered, psoriatic arthritis is often difficult to diagnose, is almost always related to psoriasis, and very

4

National Psoriasis Foundation® PSORIASIS ADVANCE

LIVING WELL WITH PSORIATIC ARTHRITIS

“The majority of patients with psoriatic arthritis can be rid of their pain, swelling, stiffness, fatigue and disability—and can prevent crippling and deformity—if they seek early and appropriate care.” –Dan Fohrman, M.D.

often can be controlled with the right treatment, especially if it’s caught early. In fact, says Bend, Ore., rheumatologist Dan Fohrman, m.D., “The majority of patients with psoriatic arthritis can be rid of their pain, swelling, stiffness, fatigue and disability—and can prevent crippling and deformity—if they seek early and appropriate care. Even people with long-standing disease often have much of their quality of life restored after years of arthritis, once they begin aggressive treatment regimens.” Researchers don’t know what causes psoriatic arthritis, but believe that, like psoriasis, it may be genetic. It can’t be prevented and, for now, there is no cure. An early diagnosis, though, can lead to effective treatments that minimize or halt further damage to joints and tissues.
Who gets psoriatic arthritis?

arthritis. A correct diagnosis usually is made through physical exams and lab tests, including blood tests and X-rays, as well as a review of the patient’s medical history. Until the 1980s, researchers debated whether psoriatic arthritis was a condition separate from psoriasis or from rheumatoid arthritis, says Gail Zimmerman, former National Psoriasis Foundation CEO, who retired last December after 28 years at the agency’s helm. “Gradually it became recognized as its own disease, with its own unique features,” she says. “The development of biologic medications aimed at treating the condition put psoriatic arthritis ‘on the map.’ Biologics, which are treatments derived from cultured cells, offer the possibility that psoriatic arthritis can be well-managed and brought under control.”
keeping it at bay

Statistics show that people with psoriasis have a higher rate of arthritis than the general population. most people who develop psoriatic arthritis already have psoriasis; it is much less common for someone to develop psoriatic arthritis first. From 10 percent to 30 percent of people with psoriasis also develop psoriatic arthritis, and patients tend to develop it between 30 and 50 years of age. Because its symptoms are similar to other forms of arthritis—such as stiff, swollen and painful joints—it is often mistaken for rheumatoid

Key to helping patients cope with psoriatic arthritis is an understanding that their condition is chronic, says rheumatologist Christopher Ritchlin, m.D., director of the Clinical Immunology Research Center at the University of Rochester in New York. Psoriatic arthritis rarely goes into remission and will likely require lifelong therapy. But it can be kept at bay with proper, consistent treatment, and patients can lead fairly normal lifestyles, says Ritchlin, a member of the Psoriasis Foundation’s medical Board.

March/April 2008

5

LIVING WELL WITH PSORIATIC ARTHRITIS

Patients who show symptoms of psoriatic arthritis should consider seeing a rheumatologist, a doctor who specializes in diagnosing and treating arthritis. many psoriatic arthritis patients see both a dermatologist for their psoriasis and a rheumatologist for their arthritic condition. Ritchlin works in a clinic with both dermatologists and rheumatologists who see patients with both conditions. Treatments for psoriatic arthritis depend on the severity of the disease, as well as the patient’s quality of life and ability to function as normally as possible, Ritchlin says. “The disease ranges from very mild to extremely severe, so treatment plans vary from patient to patient,” he says. Thanks to effective and appropriate medication, David lyon is able to live a fairly active lifestyle. Well aware that having both psoriasis and psoriatic arthritis can also affect his mental health, he uses other strategies to help him cope. Regular exercise, he says, helps keep him fit and better able to cope with his psoriatic arthritis. lyon says it helps to talk about the disease and treatment options and to share experiences with others who have it. For some people, support groups provide that outlet. lyon’s approach is to be an advocate for public funding for psoriasis research. He participates in Psoriasis Foundation advocacy programs and was among Foundation staff and supporters who attended Capitol Hill Day in Washington, D.C., in early march to urge members of Congress to support psoriasis and psoriatic arthritis research. Finally, lyons advises being positive and persistent. “If a treatment doesn’t work in a certain time frame, go back to your doctor,” he says. “It’s a process you have to work through until you find the right solution.”

Treatments for psoriatic arthritis
Treatments are divided into three categories:

1.

Nonsteroidal antiinflammatory drugs (NSAIDs), including over-the-counter medications such as aspirin and ibuprofen, and prescription drugs. These therapies may be all that are needed to treat the symptoms of pain and swelling caused by inflammation.

2.

Disease-modifying antirheumatic drugs (DMARDs), which are used to control more severe disease. They are used to slow down or prevent spreading of the disease to new joints, or progressive damage and deformity of involved joints. Biologics, also considered DMARDs, are just as beneficial, but more potent. They are injected or infused into the body rather than taken orally. They are more expensive than most other treatments.

3.

Alternative and complementary approaches are sometimes used to treat psoriatic arthritis. These include physical therapy, exercise and conditioning programs, splints, joint injections and surgery.

For more information, visit www.psoriasis.org.

6

National Psoriasis Foundation® PSORIASIS ADVANCE

LIVING WELL WITH PSORIATIC ARTHRITIS

Psoriatic arthritis:

Getting the sleep you need

By Sara McCall

IF You HAVE PSoRIAtIC ARtHRItIS, you probably know that getting a good night’s sleep can be hard to do. Your joints may ache, and if you have the symptoms of psoriasis, itching may also keep you from getting the shut-eye you need. According to National Psoriasis Foundation patient survey data presented at the 25th Annual Dermatology Nurse’s Association (DNA) Convention in 2007, half of the respondents surveyed reported sleeping problems in the previous month due to their disease.

Experts say that getting enough sleep at night is an important part of managing the disease and can help reduce fatigue and ease painful joint inflammation. How can you fight fatigue and get the rest you need? Start by working with your doctor to find a treatment that controls your arthritis symptoms, such as joint pain and swelling. In severe cases, you may want to inquire about medications designed to help you sleep. Then take some measures at home to improve your sleep.

Your sleep space:
Adjust your bedroom environment so that it encourages sleep. Keep the room temperature cool, but not too cold. Make sure there are no lights or noises that will keep you awake. Try eyeshades or earplugs to reduce distractions. Find the right mattress for your body. Maybe you need a firm, comfortable mattress for support. On the other hand, a waterbed might allow more movement and keep your joints loose.

March/April 2008

7

LIVING WELL WITH PSORIATIC ARTHRITIS

Your sleep schedule:
Pay attention to your body’s ideal sleep cycle. If you seem to get better sleep by staying up later and waking later, try to adjust your schedule. A light snack may keep you from waking up Once you know your body’s schedule, stick to it. This creates a routine that will help your body prepare itself for sleep each night. Lighten up on alcohol, caffeine and smoking as Talk to your doctor about the best time to take pain medication to allow for a good night's sleep. If pain keeps you awake, a hot bath can help relax knotted muscles and relieve joint pain. you get close to bedtime. due to hunger. However, too much food or sugar can keep you awake. A cup of herbal tea or warm milk can be soothing, but try not to drink too much liquid. You’ll avoid frequent trips to the bathroom.

Right before bed:
Vigorous exercise just before sleep can keep you awake. Exercise is important, but do it earlier in the day so it doesn't interfere with
BIO 1005-7 Foldalight HalfPg NPF Ad
A D V E RT I S E M E N T

Try relaxation techniques such as meditation, visualization and yoga to get your body and mind ready for sleep. Other ways to relax include reading or listening to soothing music.

your sleep.

2/2/06

4:34 PM

Page 1

Full Booth Benefits At Home... SEE The Light
Available with NarrowbandUVB

S AFE • E FFECTIVE • E CONOMICAL

For over 30 years, National Biological has been the innovator in home phototherapy, your best treatment option for psoriasis. Phototherapy has a proven track record of success over many years. No injections. Treatment with your doctor’s prescription in the comfort and privacy of your home. Best of all, National Biological offers FREE insurance reimbursement assistance as well as payment plans to fit your budget.

Foldalite III™

Phototherapy Device
folds flat for convenient storage

Why suffer another day? To learn how you can SEE the light call
or visit www.PhototherapyExperts.com

800.338.5045

Dermalight® 80

The Phototherapy Experts
1532 Enterprise Parkway, Twinsburg OH 44087 330.425.3535 • Fax 330.425.9614 E-mail nbc@natbiocorp.com
Caution: Federal law restricts this device to sale by or on the order of a physician. © 2006, National Biological Corporation. All rights reserved.

Narrowband-UVB Spot Treatment Phototherapy Device for handheld convenience

8

National Psoriasis Foundation® PSORIASIS ADVANCE

LIVING WELL WITH PSORIATIC ARTHRITIS

A little exercise goes a long way
By Sara McCall

ExERCISING IS IMPoRtANt for everyone’s overall health and is especially beneficial for people with psoriatic arthritis. If you’re reluctant to exercise, here’s something to keep in mind: Exercising doesn’t mean pain and long workouts. You can enjoy the rewards of exercise just by adding little movements throughout your day. Here are some tips to get you started:
Schedule 10-minute walk breaks in your planner or calendar. Do ankle rolls, heel/toe raises and knee lifts while sitting at your desk or in a chair. Park your car a little farther away than usual or avoid drive-up windows to add extra steps to your day.

Go easy on your joints

If you have psoriatic arthritis, you may have difficulty performing basic tasks because of joint swelling, stiffness and pain. This just means you have to think creatively about how to do these tasks without discomfort. Preventative measures can help you avoid placing too much stress on your joints. Here are some tips for tackling everyday tasks:
If you’re doing a repetitive task such as vacuuming or ironing, take small breaks to give muscles and joints a rest. Switch hands to spread the work equally. Avoid activities involving pro-

While watching television, do mild exercises during commercial breaks.

longed standing or walking. If you can’t avoid walking or

If you can, take the stairs instead of the elevator. If you need to climb several stories, walk up one or two and then take the elevator.

standing, have a portable chair, walker or cane nearby in case you need to rest. Put the contents of squeeze-type bottles into containers that let you pour liquid out.

Talk to your doctor before starting any exercise program, and stop any activity that causes extreme pain or discomfort. Ignoring pain is not a good idea and may lead to injury, so always listen to your body. Consult your doctor if you experience pain.

Know when enough is enough, and don't be shy about asking family and friends for help when you need it.

March/April 2008

9

Coping with chronic disease
By Mary Bellotti

“Living well is the best revenge.”
hen 17th-century clergyman and poet George Herbert coined this adage, he probably wasn’t referring to people with psoriasis, psoriatic arthritis or other chronic diseases. Still, it can be worthwhile advice for anyone coping with lifelong or recurring illnesses.

Illustration by Carrie Geygan

10

National Psoriasis Foundation® PSORIASIS ADVANCE

tudies show that depression and anxiety often accompany chronic diseases. It can be wearying and discouraging to cope daily with the pain, discomfort and fatigue common to long-term illness. Even so, it is possible to live well. The key, say medical experts, is for patients to take charge of their health care through effective treatments and by striving to maintain a positive attitude. “The first step is to get adequate medical treatment for the disease and for other problems that may exist,” including anxiety and depression, says Rebecca Ross, a psychiatric mental health nurse practitioner at Oregon Health & Science University in Portland, whose subspecialty is treating chronically ill patients. “People need comprehensive treatment of chronic conditions,” she says. That may mean seeing more than one health care provider. Patients with psoriasis and psoriatic arthritis, for example, often see dermatologists and rheumatologists in addition to their primary care provider. Consulting mental health specialists to help patients accept changes in their health or their abilities can also be part of a treatment plan.

S

“many patients who have been disabled can be restored to a normal or near-normal existence,” says Dr. Dan Fohrman of Bend, Ore., a rheumatologist whose patients include people with psoriatic arthritis. Portland psychologist Alan Chino, who specializes in treating people with chronic pain, says coping with a long-term illness presents an opportunity for self-assessment and a chance to make healthy changes. “People who do best in any kind of chronic illness are those who are able to look deeper into their lives,” Chino says. “It’s an opportunity to examine their quality of life and make concrete changes— to start doing things that are self-nurturing.” Seeking support from loved ones, health care providers, support groups or organizations such as the National Psoriasis Foundation is an important step. “Not everybody needs to see a psychologist,” Chino notes. “Support can come from a family member, a close friend or someone very understanding. There’s no substitute for human support.”

>>
“The first step is to get adequate medical treatment for the disease and for other problems that may exist,” including anxiety and depression.” –Rebecca Ross

March/April 2008

11

Here are more suggestions to help people live well with a chronic condition:
• Develop an exercise program to boost physical and emotional health. Health care providers or fitness experts can help patients find activities that fit their abilities and preferences. • Be positive. Low self-esteem is often a problem for people with

“The way you carry yourself makes a difference in the way people respond to you. The positive attitude will come. Think of ways you might be able to adjust your sense of self, regardless of your limitation.” –Alan Chino

psoriasis and psoriatic arthritis. People whose self-worth depends on their appearance, for instance, might become isolated for fear of being seen in public. One way they can overcome such fears is to take a walk through a shopping mall, imagining themselves as self-assured, even if they aren’t feeling that way. “The way you carry yourself makes a difference in the way people respond to you,” says psychologist Alan Chino. “The positive attitude will come. Think of ways you might be able to adjust your sense of self, regardless of your limitation.” Guided imagery, self-hypnosis and meditation are other avenues for developing positive attitudes, Chino says. • Make a “personal assessment” list that identifies abilities and sets goals. Then figure out ways to achieve those goals. Advises Chino: “Write down the ways you feel your illness has control over you, such as a list of things you won’t do because of it. Then set goals that will help you take back control.” • Concentrate on other pursuits such as family, friends, pets, career. These are great ways to work toward an improved quality of life, says Rebecca Ross, mental health nurse practitioner. “Find whatever it is in life that gets you up in the morning,” she says. • Make time for relaxation to help relieve the stress of coping with a chronic illness. “We don’t talk about relaxation or restoration time in our culture,” Ross says. “Most people don’t take soothing baths because it takes 30 or 40 minutes. There’s no reason why we can’t do that instead of, say, watching TV. Find the joy in your day as much as possible.”

12

National Psoriasis Foundation® PSORIASIS ADVANCE

Miami | Jan. 13, 2008
800-plus walkers raised nearly $200,000 for National Psoriasis Foundation programs and services.

1.

2.
1. CariDee English, America’s Next Top Model 2006 and spokesperson for the National Psoriasis Foundation, shares smiles with 8-year-old Brooke Krantz. 2. CariDee and members of the Henschel family lead the walk’s participants. The Henschels hatched the idea for the Miami walk in 2007 and chaired the event this year. 3. These smiling faces belong to 12-year-olds Olivia Sacks, left, and Tori Henschel. 4. Special guests included U.S. Rep. Debbie Wasserman Schultz (D-Fla.-20), organizer Andrew Henschel and CariDee. 5. The walk’s largest team—Kids in Blue— represented Miami’s St. Agatha Catholic School.

3. Upcoming walks: Los Angeles, Calif. New York, N.Y. San Francisco, Calif. Ann Arbor, Mich. Portland, Ore. Washington, D.C. Kansas City Dallas, Texas San Diego, Calif. April 26 May 18 June 14 June 28 July 12 Aug. 3 Sept. 6 Sept. 20 Oct. 4

4.

Visit www.psoriasis.org to learn about our “virtual” walk.

5.

March/April 2008

13

A D V E RT I S E M E N T

in dynamic programs that are spreading awareness about psoriasis. During this stimulating weekend, you’ll find workshops ranging from treatment options to lifestyle tips and tools that suit the needs of young people and adults, patients and caregivers. All are designed to help you achieve better overall health while controlling your psoriasis. You’ll meet with experts in psoriasis and psoriatic arthritis, make lasting connections with other patients and caregivers and learn ways to get involved and make a difference. Bring your family and enjoy all that Orlando has to offer. See you there!
Orlando/Orange County Convention & Visitors Bureau, Inc.®

Meet us in Orlando!
Aug. 15-16, 2008 Buena Vista Palace Hotel
Join us for the National Psoriasis Foundation® 2008 National Conference
in majestic Orlando, Fla., home of magical Disney World and other fun-filled attractions, shopping, dining and adventure. We’ve got the future in mind and we’re thinking about what we can do now to move forward mindfully and healthfully. At the conference, you’ll experience a new vision for health as you put new lifestyle tools into practice, learn about the latest advances in research, and share

Downtown Disney Marketplace is the place to go for dining, entertainment, nightlife and shopping. It is home to the largest Disney character store in the world.

Hotel info

Buena Vista Palace Hotel & Spa 1900 Buena Vista Drive Lake Buena Vista, Fla. 32830 Main: 407.827.3360 | Toll-Free: 866.397.6516 www.buenavistapalace.com

nights after the conference, but room availability is not guaranteed. To stay additional nights, reserve early. For more information about booking your hotel room, visit www.psoriasis.org/events/conference/2008/hotel.php.

Room rates:

Airfare info

Special room rate (single/double occupancy) of $135 per night plus tax, for attendees Friday and Saturday nights, Aug. 15 and 16. Call 866.397.6516 and identify yourself as a National Psoriasis Foundation Conference attendee. Rate is guaranteed only through July 24. Rate is also available to conference attendees 3 nights before and 3

For airfare discounts, contact Psoriasis Foundation travel agent Linda Miller, at linda_nobhill@yahoo.com or toll-free at 877.227.3530. Attendees who arrange to fly United Airlines through Linda Miller will receive a discount of 5 percent off daily published fare. (Fares available through Linda Miller may not be the most economical available.)

The National Psoriasis Foundation gratefully acknowledges Abbott, Amgen and Wyeth, Astellas Pharma. Inc., and Centocor, Inc., for their support in helping to make this conference possible. The National Psoriasis Foundation is solely responsible for all conference content and development.

16

National Psoriasis Foundation® PSORIASIS ADVANCE

National Psoriasis Foundation® 2008 National Conference registration
Register online (www.psoriasis.org/events) • By phone (800.723.9166) • By fax (503.245.0626) By mail (6600 SW 92nd Ave., Suite 300, Portland, Ore. 97223) If you are an exhibitor or other corporate representative, please call Eve-Maridy Rice (800.723.9166, ext. 386) to register for the conference. To register more than two people, please photocopy this sheet. If you have any questions, please call Eve-Maridy Rice (800.723.9166, ext. 386). Find complete hotel information about the Buena Vista Palace Hotel and Spa at www.psoriasis.org/events/conference.
Attendee 1 (please list first and last name of attendee) Address

Phone

home business

E-mail

Please include me in the conference directory (Directory will include name, city, state, home phone number and e-mail.) I am a vegetarian If minor,* age

Attendee 2 (please list first and last name of attendee) Address

Phone

home business

E-mail

Please include me in the conference directory (Directory will include name, city, state, home phone number and e-mail.) I am a vegetarian If minor,* age

Fee (per attendee) Members $75 by July 11 $95 after July 11 Non-members $95 by July 11 $115 after July 11 Become a member Pre-order your official 2008 national conference T-shirt $10 each

Details

Amount

Includes admission to all sessions, 1 reception/special event, 1 breakfast and 1 lunch

Recommended annual donation of $35.00 Size Quantity TOTAL S M L XL XXL

Check enclosed for the amount of $ I authorize the amount of $ American Express Credit card # Discover/Novus

for all listed attendees. (Payable to National Psoriasis Foundation) to be charged to the following credit card for all listed attendees: MasterCard Visa Exp. date

Cancellations received by July 11 will receive a 100 percent refund. Cancellations received between July 14 and Aug. 4 will receive a 50 percent refund. Cancellations after Aug. 4 will not receive a refund. Payment must accompany registration. *Minor must be accompanied by an adult. March/April 2008 17

A D V E RT I S E M E N T

Liberated by Light
—M.M., XTRAC patient

XTRAC Ultra Excimer Light Therapy
Concentrated UVB light frees psoriasis patients from the unpleasant symptoms of the disease
• Provides effective, safe UVB light that targets the plaque and spares normal skin • Clears psoriasis with faster and fewer treatments than conventional light therapy* • Provides long-lasting relief—typically for several months—with no systemic side effects • Covered by Medicare and most major insurance companies

Dramatic results with the XTRAC Ultra†

BEFORE

AFTER

To find an XTRAC physician in your area,

Call 877-44-XTRAC

Precisely.
*Data on file, PhotoMedex, Inc. † Individual results may vary. Patent Nos. 4,891,818, 4,927,231 5,015,067, 5,044,717

For more information: 877-44-XTRAC www.photomedex.com 01/08 PhotoMedex – P/N 0800-8198

18

National Psoriasis Foundation® PSORIASIS ADVANCE

‘‘

‘‘

I could not wear short-sleeved shirts. I was totally embarrassed by my red, flaky skin. Now, my elbows are completely clear. XTRAC has changed my life.

Dr. Elinor Mody Dr. Abrar Qureshi Co-directors Center for Skin and Related Musculoskeletal Conditions Brigham and Women’s Hospital in Boston, Mass.

Dr. Tell me

Editor’s note: Dr. Elinor Mody, a rheumatologist, and Dr. Abrar A. Qureshi, a dermatologist, work together with patients who have related skin and rheumatic diseases. Their particular interest is in treating psoriasis and psoriatic arthritis. They teamed up to answer our questions.

I’ve just started treatment for psoriatic arthritis and I know that, over time, it can damage joints and tissues. Is there anything I can do to stop this disease from progressing?

gout. If your pain is from psoriatic arthritis, the correct medications, in addition to exercise and weight loss, will help tremendously.
Is surgery ever recommended to treat psoriatic arthritis?

Yes, absolutely. There are many medications currently on the market that not only treat the symptoms but also appear to slow the progression of the arthritis. Your doctor will be able to help you find the best treatment.
As someone with psoriatic arthritis, I’ve been referred by my dermatologist to a rheumatologist as well. How do they work together?

Orthopedic surgery is only recommended for endstage disease of certain joints, in particular the hip and knee.
I try to exercise, but sometimes it hurts too much. How important is exercise in dealing with PsA? What kind of exercise is best?

This can vary from institution to institution, and from doctor to doctor. Ideally, your dermatologist and your rheumatologist should work together via phone, email, letters, or, as in our institution, in person. Combined rheumatology-dermatology centers are increasing in popularity, and more and more are opening.
The psoriatic arthritis in my knees is so painful, I have trouble walking up stairs. Psoriatic arthritis also can affect hands, feet and back. What can patients do to relieve the pain, stiffness and swelling?

Exercise is very important. It increases range of motion and strengthens muscles around the joints, which in turn takes pressure off the joints. Additionally, exercise is beneficial from a cardiac standpoint, which is particularly important for patients with psoriasis. From a “joints” point of view, swimming is the best exercise, as it is very low impact. However, the best exercise is the one that the patient with psoriatic arthritis enjoys or tolerates the best.
I like to have a glass or two of wine most evenings. Can I drink alcohol while I’m being treated for psoriatic arthritis?

The first thing to do is to ensure that the pain you are feeling is, in fact, psoriatic arthritis, and not one of the other types of arthritis common in patients with psoriasis, such as osteoarthritis or

This depends on the type of therapy being used. methotrexate, in particular, should not be used with alcohol.

March/April 2008

19

Are there any lifestyle changes I should make to relieve my psoriatic arthritis?

Exercise, exercise, exercise!!! Weight loss may also help, particularly with arthritis of the hip and knee.
I’ve read that glucosamine and chondroitin can help relieve the pain of some forms of arthritis. Do these supplements have any effect on psoriatic arthritis? Are there any other supplements or alternative treatments for psoriatic arthritis?

Ideally, nothing should be taken during the first trimester of pregnancy. Tylenol, or acetaminophen, is generally considered safe during pregnancy. Enbrel and similar biologics might be safe during pregnancy, though most physicians do recommend that pregnant patients stay off these medications during pregnancy.
My psoriatic arthritis seems to be in remission. What will happen if I stop taking my medications or cut back on the amount I’m taking?

These supplements have been used and studied in patients with osteoarthritis, and found to only have minimal, if any, usefulness. The only supplement that has been shown to be effective in some forms of inflammatory arthritis is omega 3 fatty acids, as found in fish oils and flax seed oil.
I’m pregnant and have just been diagnosed with psoriatic arthritis. What kinds of treatments, including pain medications, can I safely take?

Unlike rheumatoid arthritis, psoriatic arthritis can be an intermittent disease. Whether or not to take a “drug holiday” depends on how severe your arthritis is and whether or not being off medication might cause undue risk of significant joint damage. Therefore, this question has to be addressed on a case-by-case basis by patients and their physicians.

Do you have questions for Dr. Tell Me? E-mail them to getinfo@psoriasis.org.

We gratefully acknowledge bequest gifts from the following National Psoriasis Foundation members:
Virginia M. kapphan Jack S. Thompson Martha G. Sanders George N. Young

GR O W O UR C O MMUNIT Y!
Add the National Psoriasis Foundation to your will and improve the lives of people with psoriasis for years to come.
To learn more, please contact Barry Anderson, at 800.723.9166, ext. 392.

Please consider creating a lasting legacy by including the Psoriasis Foundation in your estate plans. To learn more, contact Barry Anderson, at 800.723.9166, ext. 392.

20

National Psoriasis Foundation® PSORIASIS ADVANCE

A D V E RT I S E M E N T

If you don’t have psoriasis, turn the page.
If you do, get a free copy of living well in a world that doesn’t understand psoriasis.

Speaking Clearly:

Psoriasis can be more than just a physical disease. You may have feelings of anxiety and depression that keep you from being yourself and getting the most out of life. That’s why we’re offering people with psoriasis a free copy of this book and all the helpful advice, insight and tips that it features. Order yours today, and learn how living with psoriasis and living well can go hand in hand, even when the world doesn’t understand.

Get your free copy:
©2007 Abbott Laboratories Abbott Park, IL 60064 07F-64N -V214-3

Call 1-866-611-6938 • Go to speakingclearly.com
July 2007 Printed in U.S.A.

Lend a hand and help get a fair shake for psoriasis!

D

o you think it’s time for psoriasis to be recognized as the serious disease it is? The National Psoriasis Foundation does, so we’ve launched the Fair Shake Campaign. Help us get a “fair shake” for psoriasis by meeting with your members of Congress to explain the impact of psoriasis, and have your picture taken with elected officials “shaking hands” on their support for the psoriasis community. This campaign offers a fun and engaging opportunity to connect with your members of Congress and raise the profile of psoriasis. One-on-one meetings are the ideal way to educate elected officials and their staff about the disease; debunk common myths; and request their support for policies, programs and funding that will help advance efforts to find a cure and

improve access to care. During this election year, senators and representatives will be spending more time at home, where they’ll be available for meetings. members of Congress pay attention to constituents who make the effort to meet with them about issues that matter, so consider scheduling a visit now. The Fair Shake Campaign builds momentum for our public policy priorities and increases visibility for psoriasis advocacy. As the saying goes, a picture is worth a thousand words, and the photos of our advocates shaking hands with their elected officials will help illustrate that psoriasis is: 1) not contagious, 2) a condition that affects a wide range of people, and 3) a disease that warrants attention and action from Congress.

HANDSHAk E S I N HI S TO RY
N OV. 10, 1871: Newspaper reporter Henry morton Stanley locates

and shakes hands with missing explorer David livingstone in Tanzania, famously greeting him with the words, “Dr. livingstone, I presume?”
A PR IL 25, 1945: U.S. soldiers cross the Elbe River at Torgau,

Germany, to shake hands with their Russian allies; the official end of World War II in Europe comes less than two weeks later.
J ULY 17, 1975: The first joint U.S.-Soviet space mission culminates
d Records nal Archives an e #121 of U.S. Natio ag Photo courtesy Pictures of World War II, im 8). n, (111-SC-20522 Administratio

when Commanders Thomas P. Safford and Aleksei leonov shake hands through the open hatch between the Apollo and Soyuz 19, marking the end of the Cold War adversaries’ “space race.”

22

National Psoriasis Foundation® PSORIASIS ADVANCE

These “photo ops” also provide a chance to request that members of Congress support the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act (H.R. 1188/S. 1459, or PPARCCA). The more co-sponsors this legislation has, the more likely it is to be passed. Finally, the meetings will help us cultivate more congressional champions who will increase recognition of psoriasis and work to boost federal research investment in psoriasis and psoriatic arthritis. How can you participate in this important campaign? Just go to www.psoriasis.org/advocacy/ action, click on “Fair Shake” and follow the simple instructions. You’ll find a template letter to request a meeting with your member of Congress; materials, talking points and tips for the meeting; and directions on what to do after you’ve gotten your “fair shake” photo. All of our advocates’ photos will be posted in an online gallery. The pictures on these pages illustrate some of the advocates who’ve already succeeded in securing the support of their members of Congress for psoriasis initiatives. Personal connections between people like you and elected officials are the most powerful and effective advocacy tool we have. Join our Psoriasis Action Network advocates across America and enlist your elected officials’ support for a fair shake for psoriasis!
Rep. Earl Pomeroy (D-N.D.-At large) helped give psoriasis a fair shake when he met with CariDee English, America’s Next Top Model® 2006 and Psoriasis Foundation spokesperson.

Psoriasis Foundation volunteer advocate Brian Lehrschall, at left, with Rep. David Price (D-N.C.-4).

Sheila Rittenberg Senior Director of Advocacy and External Affairs To join the Psoriasis Action Network, please visit www.psoriasis.org/advocacy/action or contact Alyssa Brown, 800.723.9166, ext. 407, or action@psoriasis.org.

Wisconsin advocates Patricia Hetland and Dr. Aloys Tauscheck are ready to meet with Rep. Steve Kagen (D-WI-8), a co-sponsor of psoriasis legislation in the U.S. House of Representatives.

March/April 2008

23

to the Blue Lagoon!

WIN A TRIP

A D V E RT I S E M E N T

“This is the best I’ve looked in years!”
Recommended for years by thousands of dermatologists. Results guaranteed or your money back. • Severe Scalp Psoriasis • Problem Nails • Scaly Skin
SUMMERS
LABORATORIES INC

Visit www.sumlab.com
Or call 1-800-533-SKIN(7546)

Make a difference for the millions of people affected by psoriasis and psoriatic arthritis by participating in the National Psoriasis Walk for Awareness—and get a chance to win a luxurious spa vacation! To enter, simply raise $500 as a participant in one of the walks in 2008. A trip for two will be given away. Drawings will be on or around these dates: June 13, Aug. 13, Oct. 20 and Nov. 5. About the prize The Blue Lagoon, located in Iceland, features warm, mineral-rich water known for its positive effects on skin, and especially psoriasis. You and a guest will fly round-trip aboard Icelandair. Your visit will include full room and board for two at the Blue Lagoon Psoriasis Clinic for six nights. To enter and see full contest details, please visit www.psoriasis.org/walk. Contest sponsored by:

SKN_NPF_eighth

1/14/08

1:30 PM

Page 1

!

No Steroids. No Coal Tar
• Stops intense skin & scalp itch on contact • Coal Tar FREE & Stain FREE • Feathery-light • Fast absorbing
Just spray, rub and it works! Look for the SkinZinc® System in the skin care or first aid aisle at these and other fine pharmacies:
Find out how to receive a FREE SUPPLY after

N

E

W

your purchase! Details inside box while supplies last. Free supply of SkinCylic® Skin Cleanser. NEW! Now available with Hydranize™! Visit www.SkinZinc.com for more info.

Aaaaaaah…. This sigh of relief is brought to you by Grandpa’s Pine Tar Products. • Vegetable-based alternative to coal tar products • Soap, shower gel & shampoo • Available at most health food stores
GRANDPA BRANDS COMPANY

SAVE THE DATE!
Aug. 15-16, 2008 National Psoriasis Foundation® National Conference Orlando, Fla.

For free sample, call 800.684.1468 www.grandpabrands.com

24

National Psoriasis Foundation® PSORIASIS ADVANCE

66th annual meeting of the American Academy of Dermatology
Staffing the National Psoriasis Foundation’s exhibit at this year’s American Academy of Dermatology’s annual meeting in San Antonio were, from left, Cecil Ortiz, local support group leader; Foundation Board Member Kathleen Gallant; Ninfa Cantu, local support group leader; and Olga Tuttle, Foundation education and outreach manager.

Each year, National Psoriasis Foundation staff attends the American Academy of Dermatology annual meeting, where leading dermatologists update their expertise and learn about the latest psoriasis research. Below are some highlights of the exciting data presented at this year’s 66th annual winter meeting, held Feb. 2-4 in San Antonio. Drugs in development for psoriasis

One-year data from a second Phase III trial of CNto1275 (ustekinumab) showed that administering the drug every 12 weeks provided sustained, clinically meaningful improvement in moderate-to-severe plaque psoriasis. After one year, 87 percent of patients receiving 45 mg of the drug and 91 percent of patients receiving 90 mg showed at least a 75 percent improvement in psoriasis severity scores. Ustekinumab targets the cytokines interleukin-12 (Il-12) and interleukin-23 (Il-23). These cytokines are naturally occurring proteins that are thought to play a role in immunemediated disorders such as psoriasis. (Company: Centocor, Inc.) Phase II data from a study of the Celgene oral compound CC-10004 (apremilast) showed that the compound was an effective treatment for moderateto-severe plaque psoriasis. After 12 weeks, 24.4 percent of patients treated with 20 mg of oral apremilast every 12 hours (twice a day) showed a 75 percent or greater reduction in psoriasis, while 57 percent of patients receiving apremilast achieved a 50 percent or greater reduction, as measured by the Psoriasis Area and Severity Index (PASI), a psoriasis severity score. Also, patients who received apremilast showed an average improvement of 7 points in the Dermatology life Quality Index (DlQI). An improvement of 5 points or more is considered clinically meaningful. Apremilast is a member of a proprietary pipeline of novel small molecules with anti-inflammatory activities. “These results are important not only in that they demonstrate that apremilast is clinically effective, but also that it is safe and well-tolerated,” said the study’s presenter, Dr. Kim Papp, assistant clinical professor of medicine, University of Western Ontario, Canada, (Company: Celgene Corp.)
Drugs currently approved for psoriasis

“These findings show that ustekinumab may control plaque psoriasis with as few as four injections a year,” says lead study investigator Kenneth Gordon, M.D.

CC-10004 (Apremilast) is taken orally and acts on the same substance in the immune system as other drugs that are injected or infused.

A study of the prescription drug Enbrel (etanercept) showed that the drug was effective in treating pediatric patients. Researchers hope the study will lead to other treatments for children with psoriasis. (See page 3.) (Company: Amgen and Wyeth Pharmaceuticals)

Etanercept (Enbrel) is the first biologic to be tested in children with psoriasis.

—Compiled by Christy Langan, Senior Director of Education and Outreach

March/April 2008

25

A D V E RT I S E M E N T

Concerned about the treatment of Psoriasis and Psoriatic Arthritis during pregnancy?
The Autoimmune Diseases in Pregnancy Research Study may help provide more answers. The purpose of the research study is to prospectively evaluate the risks to the fetus from autoimmune diseases and the medications used to treat these diseases during pregnancy. Who can enroll? Pregnant women who have a diagnosis of Psoriasis and/or Psoriatic Arthritis with or without the use of medications. For more information about medication use in pregnancy or to enroll in the study call toll-free (877) 311-8972 www.otispregnancy.org/autoimmune

BIO 1005-7 Panosol HalfPg NPF Ad

2/2/06

4:28 PM

Page 1

P h o t o t h e ra py L e t s Yo u S E E T h e L i g h t
Available with NarrowbandUVB

S AFE • E FFECTIVE • E CONOMICAL

For over 30 years, National Biological has been the innovator in home phototherapy, your best treatment option for psoriasis. Phototherapy has a proven track record of success over many years. No injections. Treatment with your doctor’s prescription in the comfort and privacy of your home. Best of all, National Biological offers FREE insurance reimbursement assistance as well as payment plans to fit your budget. Why suffer another day? To learn how you can SEE the light call
or visit www.PhototherapyExperts.com

Panosol II™

Narrowband-UVB Phototherapy Device shown with wings

800.338.5045

Dermalight® 80

The Phototherapy Experts
1532 Enterprise Parkway, Twinsburg OH 44087 330.425.3535 • Fax 330.425.9614 E-mail nbc@natbiocorp.com
Caution: Federal law restricts this device to sale by or on the order of a physician. © 2006, National Biological Corporation. All rights reserved.

Narrowband-UVB Spot Treatment Phototherapy Device for handheld convenience

26

National Psoriasis Foundation® PSORIASIS ADVANCE

Rate your doctor, improve your health care
By Helen Connor

Ever wonder how your physician compares with others in his or her specialty? The answer may be a mere click away on your computer.
The Internet is home to a growing number of Web sites that let anyone rate a doctor, anywhere. But beware: digital ratings provide limited information and do not contain information on every doctor in your community. Plus, most sites will charge you a fee for any information you request. Still, if you need a new doctor, or want to see how your physician’s office staff and costs compare with others in your community, online doctor rating services can be helpful.
Medicine is about people

with doctors even when the diagnosis and medical attention were positive. The surveys revealed that emotional reactions to the visit were a better indictor of how satisfied a patient was with the doctor. For example, in the case of a patient with psoriasis, could the doctor empathize with challenges that the condition caused the patient to live with? Did the doctor reach out to the patient, making contact in a supportive way?

A few of the new online physician rating services have another goal: to let patients give their doctors valuable feedback. That was the idea behind a site called “DrScore,” created by dermatologist and former National Psoriasis Foundation medical Board member Steven R. Feldman, m.D., Ph.D. Dr. Feldman was confident that patient feedback would help physicians become better doctors, especially if patients would comment on their feelings following the meeting with their doctor. He knew that medical diagnoses weren’t the problem for most patients who were dissatisfied with their physician. Surveys conducted by Wake Forest University in Winston-Salem, N.C, had already shown that patients were often unhappy

“Having a good emotional experience is part of quality care,” Feldman says. Yet the Wake Forest University surveys revealed that many patients thought their doctor was uncaring, even when they reported that he or she provided great medical care. The surveys showed that the value of a doctor’s empathy with the patient has been greatly underrated by the medical profession. Happier patients result in better medical outcomes. If that sounds too “warm and fuzzy,” Feldman suggests thinking of it this way: Patients who have had a good emotional

March/April 2008

27

experience with their doctor—who feel heard and understood—are more likely to follow their doctor’s instructions. And the better a patient follows the doctor’s advice, the more likely they are to get better. medicine is a service, he continues. “Doctors need patient feedback to improve how they deliver that service.” As he sees it, that’s the invaluable content that a physician-rating service should provide: feedback that tells doctors how to improve their communication and manner with the patient.
Not all the same

of the health care facilities, and office staff. All were tied to communication and follow-up care. “These are the points that patients themselves care about most,” says Roger Anderson, Ph.D., the study’s primary author. He notes that the study also found that doctors with the least favorable ratings were most likely to have scored low on communication, barriers to access, care coordination and interpersonal skills. “We are headed toward a more patient-directed world,” says Dr. Feldman. He sees these Web sites as part of that transition. Through online surveys, patients can tell their doctors what needs to change. Several in addition to DrScore allow patients to rate their physicians at no charge. But, he points out, doctors have to be ready to accept the feedback and make accommodations.

many of the current online services provide physician listings, but don’t identify subspecialties such as psoriasis or psoriatic arthritis. Some include a doctor’s medical board certifications or disciplinary actions that may apply. Nearly all of the Web sites charge a fee for a report that compares doctors with others in the area. Some services even charge a fee for completing a doctor satisfaction survey, or require you to buy a physician report first. This fee does reduce the risk that an irate patient may repeatedly file negative surveys on a physician they don’t like. But it also restricts survey participation. And it increases the likelihood that the ratings reflect only a segment of a physician’s practice. Barriers such as time, money and Internet access can also limit the number of people who rate their doctors.
Ratings benefit patients too

Doctor Rating Web Sites
• www.DrScore.com • www.HealthGrades.com • www.whosays.net • www.PhysicianReports.com • www.DoctorScorecard.com • www.Vitals.com • www.DoctorRate.com • www.RateMDs.com

The good news is that rating your physician can yield positive consequences. A DrScore study released in 2007 reported that seven specific characteristics can predict patient satisfaction with a doctor: physician access, communication, personality and demeanor of the provider, quality of medical care processes, care continuity, quality

28

National Psoriasis Foundation® PSORIASIS ADVANCE

It Works for me
Have you changed your diet, used emotional coping tools or altered your routine to help your psoriasis or psoriatic arthritis? If you discovered what works for you, e-mail it to getinfo@psoriasis.org, so that we may publish it in an upcoming issue, or submit it online at www.psoriasis.org/treatment/iwfm. Have you used supplements, traditional medications or alternative treatments? Please include dosage and frequency information with your tip.

Member accounts about caring for psoriasis and psoriatic arthritis. The Psoriasis Foundation does not endorse or recommend any treatment regimens, diets, medications or products.

Alberto VO5 Oasis shampoo

For my dry and tight scalp, I use Alberto VO5 Oasis shampoo and conditioner. It takes care of the psoriasis on my scalp, leaving it well-moisturized so I don’t have to put mineral oil on my scalp overnight. It also reduces psoriasis scalp flakes.

Sugar-milk scrub

mix brown sugar and milk in a glass, rub it on your psoriasis spots and rinse it off in the shower. The lactic acid in the milk helps to loosen the plaques and the sugar gently exfoliates your skin.

Editor’s note: The following items were submitted anonymously through It Works for me on our Web site. Rooibos tea Drink more water

I have had psoriasis for about 7 years. I had severe plaque on my legs, arms and the back of my hands. I recently started drinking 4 liters of water a day and cut out most of my sodas (except for my one mid-day mountain Dew for staying awake at work). my hands have almost cleared, and my legs are getting better.
Editor’s note: The Institute of Medicine advises that men consume roughly 3.0 liters (about 13 cups) of total beverages a day and women consume 2.2 liters (about 9 cups) of total beverages a day.

When my body shows any signs of psoriasis, I bathe in rooibos tea for four days straight. When I put four tea bags of rooibos tea in my bath each day, I found that it dried out my blisters and healed my psoriasis symptoms completely in two days.
Editor’s note: Rooibos tea, also known as African red bush tea, has high levels of antioxidants similar to green tea. It is reported to help with itching, but has not been studied.

Aveeno lotion and humidifiers

Avoid perfumed soaps, household chemicals

I have found that if I stay away from soaps that have a lot of perfume and dyes in them, and wear gloves when cleaning with chemicals around the house, it helps me tremendously and reduces the number of outbreaks.
March/April 2008

I have found two things that really help reduce itchiness: Aveeno lotion or any brand with dimethicone, and a room humidifier set at between 40 percent and 60 percent. They don’t get rid of it, of course, but do make things more bearable.

29

Psoriasis Support Groups
Map not to scale

Have you connected with your local psoriasis support group? The National Psoriasis Foundation affiliated support group program has grown to include more than 50 groups across the country. Why join a support group? Here’s what one member recently told us: “It helped me get a handle on some difficult insurance coverage obstacles, work through the choices of therapies and select a dermatologist,” said Jeff Adams of the San mateo, Calif., support group.

“Joining a self-help group affords networking and one-on-one counsel from others who have psoriasis,” he added. “most people do not grasp the value of such a group or are reticent about joining.” To find out if there is a support group in your area, visit www.psoriasis.org or call 800.723.9166.

ALABAMA Montgomery Sherrie Norris 334.850.1807 CALIFORNIA Anaheim Roy Poucher 714.588.8220 Bakersfield Penny McCoy 661.589.2700 Shelli Taylor 661.392.1059 Los Angeles Roy Poucher 714.588.8220 San Diego Cristy Boisvert 619.507.8418

San Mateo Diana Cordio 650.215.8623 Brendalynn Kong 510.306.8485 COLORADO Vail Tasha Thompson 817.201.0898 FLORIDA Boca Raton Charlie Berger 561.487.9957 Jennifer James 954.427.9608 Miami Barry Resnik, M.D. 305.692.8998 Orlando Laura Tweed 407.748.1442

Palm Coast Carol Duncan 386.986.3060 GEORGIA Atlanta Scott Bell 770.591.7478 ILLINOIS Chicago Mary Kay Kulinski 312.524.2083 Breanna Reader 708.296.0672 INDIANA Indianapolis David King 317.359.1924 IOWA Boone Tonya Lyons 515.432.9128

Dubuque Alejandro Pino 563.652.9943 kANSAS Wichita Shonta King 316.522.7672 MAINE Augusta Michelle Andrews 207.445.2885 MARYLAND/D.C. Baltimore Deborah Englert, M.D. 410.472.1006 Temple Hills Diane Talbert 240.350.5389

MASSACHUSETTS Boston Karen Hebb 617.500.4660 Victoria Gardner-Nye 617.500.4660 MICHIGAN Detroit Brian Masserman 248.624.8668 Doug Medonis 248.935.2122 Grand Rapids Sheila Shotwell 616.451.4401 MINNESOTA St. Paul Gertrude Coad 651.636.2571 MISSOURI kansas City Jeff Roberts 816.651.7437

30

National Psoriasis Foundation® PSORIASIS ADVANCE

St. Louis Brenda Ernst 636.394.5937 Cheryl Tracey 314.469.3302 MONTANA Billings Toni Ann Little 406.245.9719 NEBRASkA Sargent Lisa Grint 308.527.3361 NEW YORk Long Island Rick Tarin 516.379.9317 Joseph Ettari 631.656.3361 New York City Mike Kammer 201.424.2079 Pat O’Shea 718.975.6920 Poughkeepsie Samantha Wesson 845.849.2134 Rochester Denise Church 585.202.1403 Denise Shaffer 585.328.2792 Sandy Hawbecker 585.248.2539 NORTH CAROLINA Asheville Anne Serpa 828.271.4737

Fayetteville Derrick Thompson 910.864.1138 Raleigh/Durham Brian Lehrschall 919.821.5709 PJ Leary 919.272.3386 Wilmington Christopher Plent 910.602.1341 Winston/Salem Ann Boles 336.716.7731 Deanna Brown 336.788.9729 OHIO Cincinnati Maureen Fowler 513.893.1442 Cleveland Glennis Smitherman 216.791.0509 OREGON Portland Ella Malone 503.625.8517 PENNSYLVANIA Elizabethtown Heidi Kindon 717.361.1046 Karen Wynne 717.361.0519 Pittsburgh Kathleen Gallant 724.941.4419

SOUTH CAROLINA Nichols Donna Rogers 843.526.0083 TENNESSEE Cumberland County Brandon Sturm 931.788.5392

TExAS Dallas/Fort Worth David Bruce 214.632.4220 Houston Kristina Smitha 713.467.1269

VIRGIN ISLANDS Frederiksted Clema Lewis 340.772.0551 VIRGINIA Norfolk Lisa Hutchings 757.622.6315 Sandra Koch 757.465.7352

San Antonio Ninfa Cantu 210.434.2812 Cecil Ortiz 210.838.3163 312 mavena ad:desplaines chamber

1/9/08

10:09 AM

Page 1

A D V E RT I S E M E N T

Relief is Now Available

at our new Chicago-area Psoriasis clinic

BALNEO-PHOTOTHERAPY combines the beneficial elements of the Dead Sea with state-of-the-art Narrow Band UVB phototherapy to offer an effective and safe treatment. Covered by many insurance plans. We also offer Derma Line products containing the same Dead Sea Salts used in our new Chicago-area clinic. Call now for free product samples (866) 4-MAVENA.
™

1100 W. Central Rd., Ste. 306, Arlington Heights, IL 60005 1-866-4-MAVENA (1-866-462-8362) www.mavena.com

March/April 2008

31

Consumer Corner
Glove’n Care Hand Cream

Please note the Psoriasis Foundation neither tests nor endorses psoriasis products or treatments. The following is purely informational.

Glove’n Care hand cream and Scrub’n Glove liquid soap, manufactured by Essential Dental Systems contain soothing minerals from the Dead Sea that leave your hands soft and smooth. Safe for use with latex gloves. Gentle on hands. For more information, visit www.glovencare.com or www.edsdental.com.

Repair dry, rough skin

lubriderm® Intense Skin Repair Body Cream, with time-release technology, provides the essential moisture that rough, dry skin needs to help repair itself, even in problem areas. The cream formula is enriched with proteins and emollients that help lock in moisture and strengthen the skin’s natural moisture barrier, so skin feels healthier, soft and smooth. made by Johnson & Johnson Consumer Products, it is available at most drug stores. For more information, visit www.lubriderm.com.

Soothing skin care

Avene Akerat soothes and softens rough, thick and scaly areas on scalp and body. Avene Akerat S formula is intended for people with psoriasis. The key ingredients are lactic acid, salicylic acid, urea and Avene thermal spring water. For more information, visit www.aveneusa.com.

Skin Free body products

The Skin Free product line was developed for people with chronic skin conditions, including psoriasis, and delicate skin. Various products in the line promote healing and relief from skin irritation. For more information, visit www.skinfree.com.

32

National Psoriasis Foundation® PSORIASIS ADVANCE

A D V E RT I S E M E N T

T/Gel helps to control scalp psoriasis starting after just 1 use
®

T/Sal and T/Gel — a powerful regimen to fight the most severe scalp conditions
® ®

STEP #1 — T/Sal
Use 3 times a week to remove build-up and prime scalp for more intense treatment
Helps clear flakes and scalp build-up, while relieving itching and flaking

STEP #2 — T/Gel Extra Strength
Use every other day to manage psoriasis
Starts to work on contact to control redness, and intense itching and flaking of severe scalp conditions Clinically proven to work for hours even after the shampoo is rinsed off

March/April 2008

33

The Back Page
NEWS IN BRIEF

It’s time for Volunteer of the Year nominations
“It is a fact that in the right formation, the lifting power of many wings can achieve twice the distance of any bird flying alone.” ~Author Unknown

To qualify, a candidate must be nominated by a sponsor who fills out an online nomination form, and another sponsor who writes a letter of support. Candidates are chosen based on the following criteria, which should be addressed in the nomination form and letter: •	 Initiative	–	Candidate’s	activities	noticeably	

•	 Innovation	–	Innovative	or	exemplary	methods	 used in his/her volunteer service The award will be presented in August at the National Psoriasis Foundation® 2008 National Conference. The online nomination form is available at www.psoriasis.org. Or e-mail volunteer@psoriasis.org to request a nomination packet.
ADDRESS SERVICE REQUESTED
NONPROFIT ORGANIZATION

6600 SW 92nd Avenue, Suite 300 Portland, OR 97223-7195 USA

U.S. Postage Portland, OR Permit No. 1338

PAID

printed on post consumer recycled paper

ere’s your chance to tell us about extraordinary volunteers who consistently make a difference in the lives of people living with psoriasis and psoriatic arthritis. From march 1 through April 30, the National Psoriasis Foundation is accepting nominations for the Foundation’s annual Volunteer of the Year award.

H

improve the lives of people with psoriasis or psoriatic arthritis •	 Sustained	commitment	–	Ongoing	 commitment to volunteer with the National Psoriasis Foundation •	 Impact	–	Work	has	a	visible	impact


				
DOCUMENT INFO
Shared By:
Categories:
Stats:
views:111
posted:12/24/2009
language:English
pages:36