These resources can help people with psoriatic arthritis locate a doctor in their area, track symptoms, connect with other people who also have the disease, and much more. There’s no cure for psoriatic arthritis, an autoimmune disease characterized by pain, stiffness, and swelling that develops when the body attacks its own joints.
This disease can be incredibly painful and debilitating on its own, but it's made worse by the fact that the majority (as many as 85%) of people with psoriatic arthritisalso have the skin condition psoriasis, according to the National Psoriasis Foundation (NPF). Recognizing and treating both conditions as early as possible is key to mitigating the symptoms and, in the case of psoriatic arthritis, preventing permanent joint damage.
If you (or someone you love) has psoriatic arthritis, it's important to remember that you're not alone. And educating yourself about this disease and finding a strong support system can be invaluable. Here, the best resources for people with psoriatic arthritis, including websites, online message board communities, books, apps, and more.
Talk Psoriasis
What it is: An online community
The largest online support group in the world for people affected by psoriasis and psoriatic arthritis,TalkPsoriasis.org—which is sponsored by the National Psoriasis Foundation (NPF)—is a great place to ask questions, share information on everything from insurance issues to coping techniques, discover local events, and connect with other people who have psoriasis and psoriatic arthritis. Members posted more than 50,000 times last year alone, and the group has over 100,000 participants.
Living With Psoriatic Arthritis
What it is: An online community
LivingWithPsoriaticArthritis.org is a patient-to-patient forum that provides a "safe and supportive place" for people (as well as their caregivers, family, and friends) to connect with one another. The community isn't afraid to occasionally dispense some tough love (one recent comment: "We do get it, and if we think you’re having a pity party we’ll tell you to give your head a shake"). But you'll also find a trove of helpful information and genuine support from people going through the same thing as you.
The National Psoriasis Foundation’s Patient Navigation Center
What it is: A website for patients
The NPF’s first-of-its-kind Patient Navigation Center (psoriasis.org/navigationcenter) offers one-on-one virtual assistance (via email, phone, Skype, or text) for psoriasis- and psoriatic-arthritis-related issues. While NPF's team of "Patient Navigators" are not doctors, they can help people locate doctors in their area, save money on treatment, identify the best medical insurance, apply for disability coverage, find wellness coaches and local community resources, and much more.
Julie Cerrone
What it is: A personal blog
NPF contributor Julie Cerrone has been diagnosed with avascular necrosis of the knee, psoriatic arthritis, complex regional pain syndrome, prothrombin thrombophilia, depression, anxiety, and melanoma—but "I do not and will not let these diagnoses define me," she writes on her award-winning blog, juliecerrone.com. She uses the space to candidly discuss her treatment, field questions, and coach others on how to live their best lives with a chronic disease.
City Girl Flare
What it is: A personal blog
Lori-Ann Holbrook of citygirlflare.com was diagnosed with psoriasis and psoriatic arthritis in 2012, and uses her blog to chronicle what it's like to live with these conditions in an urban environment. "Although it can be tough to stay active and enjoy life during a flare," she writes, "I believe the city life is the best environment for me." Her informative writing on living with chronic disease is heath activism at its wittiest (check out 10 Reasons People with Psoriatic Arthritis Would Survive a Zombie Apocalypse).
Psoriatic Arthritis
What it is: A book
Coauthors Dafna D. Gladman, MD, and Vinod Chandran, MD, PhD, of the Psoriatic Arthritis Clinic at the University of Toronto developed their book Psoriatic Arthritis ($25; amazon.com) based on research and their own clinical experience. A breezy beach read this is not, but it can be an invaluable resource for anyone interested in what the medical community knows about psoriatic arthritis—and how doctors and patients should approach it.
Symple
What it is: An app
Many experts recommend downloading a symptom tracking app like Symple (it's free in iTunes) to monitor how diet, stress, and other factors influence your symptoms. Symple acts as a high-tech health diary, tracking potential environmental and lifestyle triggers that may be exacerbating your psoriatic arthritis. It can also generate printable "Doctor Reports," an overview of the information it collects that make it easy to share your data at office visits.
Track + React
What it is: An app
The Arthritis Foundation developed Track + React (free for iOs and Android devices) as a secure wellness tool to aggregate information on joint disease patients’ sleep, nutrition, physical activity, mood, and medication. The app helps users monitor their arthritis pain and stiffness levels and identify trends over time, and can also provide medication reminders.
International Foundation for Autoimmune Arthritis
What it is: A nonprofit organization
The IFAA is a patient-led international nonprofit founded by educators and business professionals.IFAA welcomes "sofa-approved" volunteers—that is, people who can contribute to advocacy efforts from their own homes—and provides information on community projects, advocacy events, networking opportunities, and more.
Living with Psoriatic Arthritis: Memo to Me
What it is: A vlog series
In Memo to Me, a series of short videos, 15 people with psoriatic arthritis who are now between the ages of 29 and 58 give advice to their younger selves. The biggest message? "Don’t ever give up living a normal life."
Source: health.com
