Whether you are newly diagnosed, have lived with the disease for a long time, or know somebody who has, there are great resources to help you educate yourself about the disease, connect with others, afford health care, fight against stigma, and discover the latest research.
One common misperception about psoriasis, says Nicora Gardner, health education manager at the National Psoriasis Foundation, is that its merely a skin disease. “Its a systemic disease of the immune system that can affect more than your skin,” she says. Psoriasis can increase your risk for “heart disease, depression, obesity, and diabetes,” says Gardner, which is why she says its important to educate yourself about the disease and the treatment options.
- The National Psoriasis Foundation. The website of the countrys leading psoriasis education and advocacy group is the mother lode for information about psoriasis and psoriatic arthritis. Learn about the types of psoriasis, treatment options, advocacy opportunities, locating a doctor, resources for managing the disease, and ways to navigate your health care options.
- PsoriasisNet. This site from the American Academy of Dermatology covers everything you need to know about psoriasis and includes sections on causes, treatments, triggers, minimizing flare-ups, and finding a dermatologist in your area.
Because it is a visible and chronic illness, psoriasis affects more than how you feel physically. “The mental-health aspect is huge,” says Gardner. “Its easy to become isolated and depressed. Building a support team beyond your physicians is invaluable. It helps with self-esteem and isolation, and provides a feeling of acceptance for people who have a very visible disease.”
- National Psoriasis Foundation. The foundation hosts a very active online portal with message boards, online chats, and information about live events and support groups in your area. You can also check out the foundation on Facebook.
- WeArePsoriasis.org.Share photos and treatment experiences, join communities based on mutual interests, and connect with people around the world at this active social-networking site for people living with psoriasis.
- Psoriasis Patients. People with psoriasis share tips, treatment advice, and feelings about living with the disease on this social-networking site, which also includes blogs and information about upcoming events.
Affording health care
Navigating the confusing world of health care can be a challenge, which is why the National Psoriasis Foundation offers several resources to help make the process smoother. Download the foundations Access Action Guide, in which the insured can learn how to decipher their health plan and the uninsured can find out how to get low-cost or free care. On the foundations website you can also learn about financial aid and patient assistance programs for purchasing medications, how to appeal a denied claim, and how to choose a health plan.
There is hope for the millions of people living with psoriasis in the United States. New medications, treatments, and studies are shedding light on this chronic disease. Visit these websites to stay up to date on the latest research and to find out about clinical trials:
- The Murdough Family Center for Psoriasis.Find out about cutting-edge news, research, and clinical trials on the website of this innovative research and clinical center, based at Case Western Reserve University in Cleveland.
- Journal of the American Academy of Dermatology.Type “psoriasis” into the search box to find thousands of studies about psoriasis. (Full-text access to some articles may require a subscription or fee.)
- Journal of Investigative Dermatology.Read the latest news, sign up for email alerts, and search the archives and current issues of this journal, which publishes research on biology and skin disease.
“After people have gone through the information-gathering phase, the most empowering thing people can do to fight the stigma is to do something about changing the stigma and changing the public perception of psoriasis,” says Gardner.
Visit the National Psoriasis Foundation's “Act” section to find events you can join, including the Walk for Awareness, the foundations annual Capitol Hill Day, educational events around the country, the foundations national conference, and Psoriasis Awareness Month each August.