Imagine the isolation that comes with a chronic autoimmune disease that appears on the skin and affects appearance. Psoriasis, which speeds up the growth cycle of skin cells, can result in raised red patches and other skin discolorations on any part of the body.
While it’s estimated that some 7.5 million Americans have psoriasis, the nature of the condition is such that many patients say they feel all alone. Fortunately, thanks to social media, that no longer needs to be the case.
Lissa Conger, now age 31, has lived with the impact of psoriasis for about 15 years, or half her life. She has plaque psoriasis, which can get so bad that much of her body is red and scaly.
It can be debilitating and embarrassing. For years she covered herself up, although she is a very pretty woman.
And she suffered. There are now biologic medicines that help many people, however she is trying to get pregnant and, at this time, those powerful drugs would not be recommended.
Another approach, photodynamic therapy is working.
Something else is working too. She decided to go public with her condition.
One day while viewing a social media site she saw an ad for a community of psoriasis patients and joined.
At first she was tentative. Then she started checking it every day. Finally she spoke up and even started her own blog.
Now this young woman is not only doing better physically, she is doing better mentally. And she is an inspiration to others.
Recently I interviewed Conger via Skype in her hometown of Cobb Mountain, Calif. and I’d like to encourage you to watch and listen to what she has to say, even if you don’t have psoriasis.
She shares that for those who feel alone in facing a medical condition there is hope in connecting with others and it will bring new power for a fuller life.
Watch the video here: http://www.patientpower.info/video/lissa-conger-managing-psoriasis-and-harnessing-the-power-of-patient-communities/
Many forms of online communities are available today, including Groups on EmpowHER at https://www.empowher.com/groups/
The site that Lissa Conger uses, PatientsLikeMe, enables patients to interact to help improve their outcomes. It also shares the data they provide to help researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments.
For more information, see: http://www.patientslikeme.com/
About the author: Andrew Schorr is a medical journalist, cancer survivor and founder of Patient Power, a one-of-a-kind company bringing in-depth information to patients with cancer and chronic illness. Audio and video programs, plus transcripts, help patients make informed decisions to support their health in partnership with their medical team.
Patient Power is at www.PatientPower.info/ and on Facebook, YouTube and Twitter. Schorr is also the author of “The Web Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis" found at www.websavvypatient.com/
National Psoriasis Foundation, About Psoriasis, Accessed online 5/22/12 at http://www.psoriasis.org/about-psoriasis
Interview with Lissa Conger, Psoriasis patient, 5/16/12, Available online from Patient Power at
Reviewed May 23, 2012
by Michele Blacksberg RN
Edited by Jody Smith