Support

Support & Resources for AS, RA, SLE, and PsA

RA, AS, PsA, SLE and other inflammatory conditions are complex, and often misunderstood.  If you’ve been diagnosed you may be experiencing physical pain in addition to a variety of emotions. As you learn to navigate life with a chronic condition, you’ll need two critical things: information and support.

Information: Inflammatory conditions manifest in different ways for different people. Those who suffer will experience a wide range of symptoms and unique patterns of flares. Because no two cases are identical, there is a diverse body of information about these conditions, including some myths and misperceptions. It’s important to educate yourself in order to be an empowered, proactive participant in your own healthcare. Look for information that is current, credible, and referenced from the peer-reviewed scientific literature. We hope theRAConnection and TheSpineCommunity meet your needs.

Support: These conditions can be lonely and isolating. Those who have not experienced a diagnosis simply cannot understand. It’s important to seek support from others in your situation. People who have been living with these conditions can provide invaluable emotional support as well as practical tips and resources. Find a community you can lean on. It really does take a village.

There are many resources available to you. The following list contains resources where individuals impacted by a diagnosis can access current information, share their experiences and both get and give emotional support.

Online Communities

TheRAConnection
TheRAConnection provides comprehensive information, community, connection, and support for individuals with inflammatory arthritis, psoriatic arthritis, lupus and ankylosing spondylitis.

RA Connect
The Arthritis Foundation RA Connect Forum allows you to connect with others, ask questions, and find support.

Advocacy & Support

American Autoimmune-Related Diseases Association, Inc.

American College of Rheumatology
The ACR is a non-profit organization for rheumatologists and health professionals. They develop treatment guidelines for RA and focus on education, research, advocacy, and practice support.

Lupus Foundation of America

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
NIAMS supports research, training, and education about various forms of arthritis.

SLE Lupus Foundation

The Arthritis Foundation
The Arthritis Foundation offers information and tools to help people live a better life with arthritis.

TheRAConnection
TheRAConnection provides comprehensive information, community, connection, and support for individuals with RA.

The Spondylitis Association of America (SAA)
A nonprofit organization founded in 1983 to address the needs of people living with spondylitis.

Assistive Devices

Aids for Arthritis
Aids for Arthritis provides a variety of assistive devices for people living with RA.

Oxo
Oxo designs innovative consumer products that make everyday living easier. These easy-to-use kitchen gadgets and tools can make living with RA easier.

Clinical Trials

www.clinicaltrials.gov
ClinicalTrials.gov is a registry and results database of federally and privately supported clinical trials conducted in the United States and around the world.

Financial Issues

Directory of Financial Resources
Financial Resource Guide For Patients: A state-by-state directory.

Angel Flight
Angel Flight America helps people in need seeking free air transportation to specialized healthcare facilities.

NeedyMeds
A site to learn about patient assistance programs and other programs designed to help those who cant afford their medicines.

Medicare
Official U.S. government site for people with Medicare.

Patient Advocate Foundation
Patient Advocate Foundation (PAF) is a national 501 (c)(3) non-profit case management service that assures access to care, maintenance of employment, and preservation of financial stability for Americans with chronic, life-threatening, and debilitating illnesses.

Pharmaceutical Research and Manufacturers of America
Provides a listing of pharmaceutical programs that provide drugs to physicians whose patients could not otherwise afford them.

Patient Advocate Foundation Co-Pay Relief Program
Patient Advocate Foundation’s Co-Pay Relief (CPR) program provides co-payment assistance for prescription drugs to insured Americans who financially and medically qualify. Services are provided through CPR call counselors, and payments are made to the designated payee upon approval.

Complementary & Alternative Therapies

National Center for Complementary and Alternative Medicine
The National Center for Complementary and Alternative Medicine (NCCAM) is the Federal Government’s lead agency for scientific research on the diverse medical and health care systems, practices, and products that are not generally considered part of conventional medicine.

Prescribed Reading

A Resilient Life: Learning to Thrive Not Just Survive with Rheumatoid Arthritis, Kat Elton

The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed, M.E.A. McNeil and Kenneth Sack.

Good Living with Rheumatoid Arthritis. The Arthritis Foundation.

Current Rheumatology Diagnosis and Treatment. Imboden, John, et. al.

Rheumatoid Arthritis, Plan to Win.  Koehn, Cheryl, et al.

The Arthritis Help Book.  Lorig, Kate, R.N., Dr. P.H. and James F. Fries, M.D.

A Patient Expert Walks You Through Everything You Need to Learn and Do. McNeil, M.E.A.

The Hospital for Special Surgery Rheumatoid Arthritis Handbook. Paget, Stephen A., M.D

The Duke University Medical Center Handbook of Arthritis. Pisetsky, David S. M.D.

Living with Rheumatoid Arthritis.  Shlotzhauer, Tammi, et.al.

Rheumatoid Arthritis. St. Clair, E. William, M.D. et.al.

The Arthritis Action Program. Weinblatt, Michael, E. M.D.

Prescribed Reading: Books for Healthy Living

Zen and the Brain, Towards an Understanding of Meditation and Consciousness.  Austin, H. Ph.D.

Finding a Joyful Life in the Heart of Pain.  Cohen, Darlene.

Full Catastrophe Living.  Kabat-Zinn, Jon.   New York:  Delta, 1991.

Celebrate Life:  New Attitudes for Living with Chronic Illness. Lewis, Kathleen.

The Anatomy of Hope.  Groopman, Jerome.

Exercise Beats Arthritis:  An Easy to Follow Program of Exercises.  Sayce, Valerie and Ian Frasier.

The Lupus Book:  A Guide for Patients and their Families.  Wallace, Daniel J., M.D.

Coping with Prednisone. Zukerman, Eugenia and Ingelfinger, Julie, M.D.