by Mia James, updated 7/2020
Ankylosing Spondylitis is 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.
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.
In addition to several Facebook groups there are communities moderated by patients and doctors who manage AS.
TheArthritisConnection- TheArthritisConnection provides comprehensive information, community, connection, and support for individuals with ankylosing spondylitis.
Advocacy & Support
TheSpineCommunity- TheSpineCommunity provides comprehensive information, community, connection, and support for individuals with AS.
The Spondylitis Association of America (SAA)-A nonprofit organization founded in 1983 to address the needs of people living with spondylitis.
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.L
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)- NIAMS supports research, training, and education about various forms of arthritis.
The Arthritis Foundation- The Arthritis Foundation offers information and tools to help people live a better life with arthritis.
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.
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.
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.