Lupus Patient Resources from The Lupus Encyclopedia
The Lupus Encyclopedia cannot cover every aspect of interest to people who have lupus or their family members or friends. The following represents only a small percentage of the vast amount of information available through organizations, in print, and on the internet. I have included those sources that I feel are helpful and up to date and those with which I am familiar. These sources are professional and accurate and give good advice and services to people with lupus and other problems. I have tried to mainly include printed sources that are most recent (within the past ten years). There are other important, excellent sources that I may not know about and that may not be listed here. However, it does not mean that they are any less valuable than those that are. Please note that organization addresses, websites, emails, and telephone numbers may change over time.
The following are some guidelines about accessing medical information not listed here (including Internet sources, organizations, books, and healthcare providers):
- Avoid any source promising a cure. In this same light, be skeptical of any treatment that promises “quick,” “dramatic,” or “miraculous” results.
- Avoid sources stating that mainstream medicine and doctors are not trusted and are wrong in their advice.
- Be skeptical of sources that appear to try to sell something. This includes healthcare providers who sell vitamins or other dietary supplements as part of their practice.
- Be wary of sources that use words such as “toxins,” “detoxify,” “purify,” “revitalize,” “rejuvenate,” “support,” and “boost.” These nonmedical terms are often used to sell unproven therapies and supplements.
- Be skeptical of proposed treatments that primarily cite personal experiences (anecdotes or testimonials) instead of proving the therapy works through major research studies. Studies in major peer-reviewed medical journals involving large numbers of patients using a placebo to compare a potential treatment (randomized, controlled trials) are the best to trust.
- Be skeptical of a treatment that only mentions good benefits without listing any possible adverse effects. It is rare for a truly effective treatment to have good results without potential side effects, especially for a complex disorder such as lupus.
- Be skeptical of any therapy that states that it treats lupus along with a large number of other disorders (especially if they are unrelated diseases such as AIDS, cancer, etc.).
- Sources endorsed by professional and patient advocacy organizations such as the Arthritis Foundation, the Lupus Foundation of America, the Sjögren’s Foundation, and others tend to be reviewed by experts and can usually be trusted.
- Read books that have a recent publishing date. Medical information and knowledge increase and improve yearly. A source that was produced within the past five years is best. Sources more than ten years old probably have too much-outdated information to be completely trusted, even if they were the best sources of information at the time.
- Be wary of information and sources written by doctors who use superlatives such as “America’s leading . . .” or “the world’s foremost expert in . . .”, and the like unless this is written by a third party about the doctor or person. People who are selling themselves with their own agenda in mind often use these phrases. Most experts in medicine I know tend to be quite unassuming and modest and rarely need to sell themselves.
- Be skeptical of any source stating that mainstream medicine is incorrect, that the doctors in mainstream medicine persecute them, or that their work is suppressed because it is controversial. In medicine, there are always controversies. Controversies are actually good and desired by mainstream medicine. They push the medical community to formally evaluate these controversies, accept those proven correct, discredit those found to be wrong, and continue to improve over time. The physicians who believe in their controversial ideas rarely try to sell their ideas to the public or patients before they are proven. They work on establishing their ideas through the proper research avenues instead.
- Be skeptical if a source tells you not to trust your doctor. A truly professional healthcare provider would not say this unless they know that another healthcare provider is inept or not trusted.
- You cannot assume that everything written by a medical doctor (MD or DO) is accurate. Unfortunately, not all doctors ascribe to the highest levels of medical knowledge and integrity. Be very skeptical of anything that does not satisfy the above recommendations (even if written by a doctor). If a medical source appears suspicious, ask your personal doctor for their opinion.
Lupus Patient Advocacy Organizations (U.S.)
Patient advocacy organizations generally have patients, friends, family members, and medical professionals as members. They tend to focus on patient education while also striving for public education, encouraging research, and advocating for patients with governmental issues. You may want to consider joining some of these groups. You can obtain additional self-education while also having opportunities to participate in volunteer work and social advocacy.
This first group are groups focusing on lupus in the U.S. The second group are U.S. groups for related medical problems, and the 3rd group are for lupus support organizations around the world.
Kaleidoscope Fighting Lupus
Looms for Lupus
Lupus Alliance of Upstate New York
Lupus and Allied Diseases Association, Inc.
Lupus Foundation of America, Inc.
Lupus Foundation of New England
Lupus Foundation of Southern Arizona
Lupus Research Alliance
Lupus Patient Advocacy Groups (Worldwide)
APS Support UK (formerly the Hughes Syndrome Foundation)
BC (British Columbia, Canada) Lupus Society
Dubai Lupus Foundation
Guyana Lupus Plus Foundation, Inc
International Sjögren’s Network
Lupus & Autoimmune Diseases Support Zimbabwe
Lupus Association of Antigua and Barbuda
Lupus Association Singapore
Lupus Association of Tasmania
Lupus Australia, Queensland, Inc.
Lupus Foundation of Dominica
Lupus Foundation of Fiji
Lupus Foundation of Grenada
The Lupus Foundation of Guyana
The Lupus Group of Western Australia
Lupus Group Ireland
Lupus Association of New South Wales
LUPUS Foundation of Africa
Lupus Foundation of Bangladesh
Lupus Foundation of Jamaica
The Lupus Foundation of Kenya
Lupus Foundation of Nigeria
The Lupus Foundation of Uganda
Lupus Society of Nepal
Lupus Society of Trinidad and Tobago
Lupus Trust of New Zealand
Lupus Victoria (Australia)
Malaysian SLE Association
St. Kitts and Nevis Lupus Awareness
World Lupus Federation
Education Websites about Lupus and Related Problems
ALL IN For Lupus Nephritis
Centers for Disease Control and Prevention (CDC)
GSKPro For Health Professionals: Systemic Lupus Erythematosus
Information on various diseases by the National Institutes of Health (NIH)
The Johns Hopkins Lupus Center
The Johns Hopkins Sjögren’s Center
The Johns Hopkins Vasculitis Center
The Lupus Encyclopedia
Lupus News Today
Medical News Today
MedlinePlus (National Library of Medicine)
The Merck Manual: Home Health Handbook
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
US Food and Drug Administration (FDA)
Us In Lupus
Lupus Blogs and Forums
Charla de Lupus
Despite Lupus: Living Well with a Chronic Illness
Lupus In Color
London Lupus Centre Blog
Lupus Connect by The Lupus Foundation of America
Lupus in Flight
Talk to counselors about lupus
The Lupus Site Forum
Lupus Warriors on Facebook
Mary’s Page: Living with Lupus
More Than Lupus
More Than My Lupus
My Lupus Team
Reddit Lupus Forum
We Have Lupus
Sjögren’s World Forum
UMass Lupus Blog
Patient Advocacy Groups, Related Autoimmune Disorders (U.S.)
This includes patient advocacy groups for other autoimmune disorders. It is not uncommon for lupus patients to have these other diseases.
American Autoimmune Related Diseases Association
Antiphospholipid Syndrome Foundation of America
The Myositis Association
The Vasculitis Foundation
Patient Advocacy Groups, Other (U.S.)
This includes patient advocacy groups for disorders related to SLE (such as other autoimmune diseases) and medical problems seen in SLE patients (such as kidney, liver, heart, and lung disease).
American Association of Kidney Patients
American Chronic Pain Association
American Heart Association
American Kidney Fund
American Liver Foundation
American Lung Association
American Thyroid Association
National Adrenal Diseases Foundation
National Fibromyalgia Association
National Health Council
National Kidney Foundation
National Organization for Rare Disorders
National Osteoporosis Foundation
National Stroke Association
Pulmonary Hypertension Association
U.S. Pain Foundation
Groups to Help Families and Caregivers
Create your own website on your personal journey living with lupus
Family Caregiver Alliance
National Alliance for Caregiving
Well Spouse Association
Offers support to spousal caregivers
Lupus Research and Patient Registries
Alliance for Lupus Research
Clinical Trials in Lupus (Research Studies)
Center for Clinical Trials Education (Lupus Foundation of America)
Center for Information and Study on Clinical Research Participation
Lupus Research (New York University School of Medicine)
National Institutes of Health
Rheumatology Research Foundation of the American College of Rheumatology
Search Clinical Trials
The SICCA International Registry (Sjögren’s Syndrome, Johns Hopkins Hospital)
Sjögren’s Clinic, National Institute of Dental and Craniofacial Research
Disability and Employment Assistance
ADA Disability and Business Technical Assistance Centers
Americans with Disabilities Act
Disability Rights Education & Defense Fund
Disability Workbook for Social Security Applicants. 8th edition. D. M. Smith and B. W. Smith. Demos Medical Publishing, 2012.
Employee Rights: Disability Discrimination
Website by findlaw.com
Hire Disability Solutions
How to Get SSI & Social Security Disability: An Insider’s Step by Step Guide. M. Davis, iUniverse, 2000.
Invisible Disabilities Association
Job Accommodation Network
National Council on Disability
National Organization of Social Security Claimants’ Representatives
Patient Advocate Foundation
Sharon Christie Law: Your Law Firm for Social Security Disability Benefits free ebook- Can You Win Your Social Security Disability Case?
Social Security Administration
Social Security Administration (The Work Site)
Social Security Disability and Disability Resource Center
(Application for disability)
Social Security For Dummies, 4th Edition. Jonathan Peterson, For Dummies, 2020
Social Security, Medicare and Government Pensions: Get the Most Out of Your Retirement & Medical Benefits Twenty Fifth Edition, Joseph Matthews, NOLO, 2020
US Department of Health and Human Services
US Equal Employment Opportunity Commission
US Equal Employment Opportunity Commission
Americans with Disabilities Act; Your Employment Rights
Financial Assistance (Prescriptions, Insurance)
Discount Drug Network
Giant Food Pharmacy Generic Prescription Savings
H-E-B Generic Savings
Non-profit helping the underinsured (copays, deductibles, out of pocket costs, and more)
High Risk Health Insurance Pools (National Association of Health Underwriters)
HyVee Generic Savings
Kroger Generic Drug Savings
Patient Advocate Foundation
Pre-Existing Condition Insurance Plan
Publix Pharmacy Medication Savings
RiteAid Rx Savings Program
Ro Online Pharmacy
RxAssist Patient Assistance Program Center
Target Generic Drug Savings
Together Rx Access Prescription Savings Program
Walgreens Prescription Savings Club
Winn Dixie Generic Drug Savings
Pharmaceutical (Drug) Company Patient Assistance Programs
Find out from your pharmacist what pharmaceutical companies produce your medications. Then contact their individual patient assistance programs to determine whether you qualify for help in obtaining your medications.
AbbVie Patient Assistance Program
AstraZeneca patient assistance programs
Aurinia Alliance (Lupkynis)
Genentech Patient Financial Support
GlaxoSmithKline (GSK For You)
Johnson & Johnson Patient Assistance Foundation
Lilly & Company (Lilly Cares Foundation)
Novartis Patient Assistance
Ortho-McNeil-Janssen Patient Assistance Program (Janssen Care Path)
Pfizer Rx Pathways
Roche Access To Healthcare
Professional Medical Organizations
These groups mainly have medical professionals as members, but they are also sources to obtain additional patient education.
Academy of Nutrition and Dietetics
American Academy of Dermatology
American Academy of Neurology
American Academy of Ophthalmology
American Academy of Orthopaedic Surgeons
American Academy of Pediatrics
American Board of Medical Specialties
How to tell if your doctor is board certified
American College of Pediatricians
American College of Physicians
American College of Rheumatology
American Medical Association
American Psychological Association
American Society of Nephrology
Asia Pacific League of Associations for Rheumatology
Canadian Rheumatology Association
The European Lupus Society
European Union League Against Rheumatism
National Medical Association
The largest and oldest organization representing African American health professionals in the United States
Pan-American League of Associations for Rheumatology
These are in-depth, highly technical textbooks written for doctors, especially rheumatologists. They may be of interest to anyone who wishes to obtain a much higher level of scientific understanding of lupus and the rheumatologic disorders related to it.
Dubois’ Lupus Erythematosus and Related Syndromes. 9th edition. D. J. Wallace and B. H. Hahn. Saunders, 2018.
Kelley and Firestein’s Textbook of Rheumatology, 2-Volume Set. G. S. Firestein, et al. W. B. Saunders, 2016.
Rheumatology, 7th edition. M. C. Hochberg, et al. Mosby, 2018.
Sjogren’s Syndrome: A Clinical Handbook. FB Vivino (ed.). 2019
Systemic Lupus Erythematosus: Basic, Applied and Clinical Aspects 2nd Edition. G. Tsokos (ed.). Academic Press, 2020.
Textbook of Pediatric Rheumatology 8th Edition. RE Petty, et al. 2021
Miscellaneous Books about Lupus and Related Disorders
These are other resources that can be useful for some problems in people with SLE. These books provide additional educational material.
A special note: Please be wary of any books (especially books on diet and complementary medicine that promise a “remission” or “cure” from lupus.) There are no proven cures from lupus.
Anti-Inflammatory Diet For Dummies, 2nd Edition. A Morris and M Rossiter. 2020.
The Anti-Inflammatory Diet & Action Plans: 4-Week Meal Plans to Heal the Immune System and Restore Overall Health. D Calimeris and S Bruner. 2015.
The Anti-Inflammatory Diet for Beginners: Easy Anti-Inflammatory Cookbook with A 21 Days No-Stress Meal Plan and 500 Prep-and-Go Recipes to Reduce Inflammatory. FK Rankin. 2020.
The Anti-Inflammatory Diet Slow Cooker Cookbook: Prep-and-Go Recipes for Long-Term Healing. M Given NC. 2018.
The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting on with Your Life. R. Baron-Faust and J. P. Buyon, MD. McGraw-Hill, 2016.
The Balance Within: The Science Connecting Health and Emotions. E. M. Sternberg. W. H. Freeman, 2001.
A Body out of Balance: Understanding and Treating Sjögren’s Syndrome. N. Carteron and R. Fremes. Avery Trade, 2003. (Written by a woman who has Sjögren’s syndrome and her doctor, Nancy Carteron MD, who specializes in autoimmune diseases. It contains many useful coping strategies.)
The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Revised edition. P. A. Fennell. Albany Health Management Publishing, 2012.
Chronic Pain for Dummies. S. S. Kassan, C. J. Vierck, and E. Vierck. For Dummies, 2008.
Chronically Fabulous: Finding Wholeness and Hope Living with Chronic Illness. M Zeppieri. Broadleaf Books. May 2021.
Coping with Lupus: A Practical Guide to Alleviating the Challenges of Systemic Lupus Erythematosus. R. H. Phillips. Avery, 2012. (This edition gives lots of practical advice on coping and living with lupus.)
Dancing at the River’s Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness. 3rd edition. A. Brill and M. D. Lockshin. Schaffner Press, Inc., 2009. (An excellent read for patients, family members, and medical professionals. This book explores the personal difficulties of dealing with chronic disease from both the patient’s and her doctor’s perspectives. A must-read for anyone looking for more in dealing with the emotional consequences of illness and learning how to appreciate both doctor and patient perspectives.)
Despite Lupus: How to Live Well with a Chronic Illness. S. Gorman. Four-Legged Press, 2009. (This book is especially excellent for the person who has difficulty coping with their diagnosis and treatment. It is the personal story of a woman who has SLE and her journey through the difficult times and how she finally overcame those problems. It is a motivational story with excellent recommendations on how to live with SLE.)
Dry Mouth, The Malevolent Symptom: A Clinical Guide. L. M. Sreebny and A. Vissink. Wiley-Blackwell, 2010. (This book is primarily written for health professionals caring for people suffering from dry mouth. However, people who have a dry mouth from Sjögren’s seeking more advanced information will find this resource helpful.)
The Easy Anti-Inflammatory Diet: Fast and Simple Recipes for the 15 Best Anti-Inflammatory Foods. K Frazier. 2017.
LUPUS Warrior: Lupus Journal with Assessment Pages, Symptom Tracker, Doctors Appointments, Relief Treatment and more, Lupus Awareness workbook gift. Ans. D Publishing. 2020.
Fibromyalgia: An Essential Guide for Patients and Their Families. D. J. Wallace and J. B. Wallace. Oxford University Press, 2003. (This book supplies much-needed practical information for the 20% of lupus patients who also have fibromyalgia, as well as the science behind the disorder.)
The First Year—Lupus: An Essential Guide for the Newly Diagnosed. N. C. Hanger. Da Capo Press, 2003. (This book gives practical advice on how to live with and cope with lupus and its associated problems such as fatigue and fibromyalgia written from the perspective of someone who has lupus.)
If You Have to Wear an Ugly Dress, Learn to Accessorize: Guidance, Inspiration, and Hope for Women with Lupus, Scleroderma, and Other Autoimmune Illnesses. L. McNamara and K. Kemper. Wheatmark, 2013. (This book is written by authors who have SLE and scleroderma. They describe their own journeys living with these disorders and provide valuable self-empowerment tools to help others learn to manage their own lives.)
Living with Coronary Heart Disease: A Guide for Patients and Family. J. E. Granato, MD, FACP. A Johns Hopkins Press Health Book, 2008.
Living with Lupus: The Complete Guide. 2nd edition. S. P. Blau and D. Schultz. Da Capo Press, 2004. (This book also provides a lot of practical information for people who have lupus.)
Living with Rheumatoid Arthritis. 3rd edition. T. L. Shlotzhauer. Johns Hopkins University Press, 2014.
The Lupus Book: A Guide for Patients and Their Families. 6th edition. D. J. Wallace. Oxford University Press, 2019. (Long regarded as one of the best books about lupus. Dr. Wallace is one of the world’s leading experts in lupus. His book has a lot of excellent information and is regularly updated.)
The Lupus Cookbook: 125+ Anti-Inflammatory Recipes to Live Well With Lupus. A Reisdorf MS RD. 2018.
Lupus Diet Cookbook: Top 100 Lupus Diet Recipes to Reduce Inflammation and Live Your Best Life with Lupus. K Willard. 2019.
Lupus: Everything You Need to Know (Your Personal Health). S. Bernatsky and J.-L. Senécal. Firefly Books, 2005. (Doctors Bernatsky and Senécal are leading lupus experts who provide much practical information in their book for people who have lupus, giving advice on coping with many aspects of the disorder. They provide a lot of useful information in an easy-to-read format.)
Lupus (Facts). 2nd edition. D. Isenberg and S. Manzi. Oxford University Press, 2008. (Dr. Isenberg and Manzi are world-famous lupologists who do an excellent job of giving concise information about lupus. This book is very short and easy to read, cutting to the chase but with a load of information about SLE.)
A Lupus Handbook: These Are The Faces of Lupus. A. G. Moore. CreateSpace, 2012. (This is an interesting book presenting information about some famous people who have had lupus, as well as an account of the author’s journey with lupus. There are chapters devoted to advice on sun protection, finance, insurance, and treatments for lupus.)
Lupus, My Doctor and Me: A Sacred Dialogue. A. A. Fricklas and S. S. Kassan. Astute Press LLC, 2010. (The authors are a woman who has lupus and her rheumatologist. It gives a wealth of helpful information on the types of conversations patients should have with their doctors. It includes a lot of useful advice on how to manage and cope with lupus.)
Lupus Pain & Symptom Tracker: A 90-Day Guided Journal: Detailed Daily Pain Assessment Diary, Mood Tracker & Medication Log for Flare-ups and Chronic Autoimmune Disorder Management. BR Press. 2020.
Lupus Q + A: Everything You Need to Know. 3rd edition. R. G. Lahita and R. H. Phillips. Avery Trade, 2015. (I like this interesting presentation. Dr. Lahita is one of the world’s leading lupus experts who provide, with the help of Dr. Phillips, a lot of information and facts about lupus in a question-and-answer format. This is perfect for the person who likes to read a little bit at a time without a long dialogue.)
Lupus Underground: A Patient’s Case for a Long-Ignored, Drug-Free, Non-Patentable, Counter-Intuitive Therapy That Actually Works. A. DeBartolo. Hyde Park Media, 2004. (Mr. De-Bartolo is a champion in spreading the word about the use of UVA-1 therapy in treating lupus. He is dedicated to getting the word out to the lupus community. This book goes deeply into the science behind it and offers information on how to use UVA-1 therapy. Hopefully, the rheumatologic community will start to do larger studies to further investigate its usefulness.)
Lupus Warrior Journal: Lupus awareness journal, A Daily Mood, Pain, Symptoms, Food.. Tracker book For lupus survivors, Health and Wellbeing diary. A Design. 2020.
The Memory Bible: An Innovative Strategy for Keeping Your Brain Young. G. W. Small, G Vorgan. Hyperion, 2021. (Large numbers of lupus patients suffer from memory problems, called cognitive dysfunction. This book gives practical advice on how to improve one’s memory.)
Mommy Has Lupus. A Wood-Russell. 2018.
My Special Butterfly: A Book To Help Children Understand A Loved One’s Life With Lupus. K Roseta. 2020. (A wonderful book that helps explain to children what lupus is when a loved one is affected. There is also a Spanish language version.)
Peripheral Neuropathy: When the Numbness, Weakness, and Pain Won’t Stop. N. Latov. Demos Medical Publishing, 2006.
The Scleroderma Book: A Guide for Patients and Families. M. D. Mayes. Oxford University Press, 2005.
The Sjögren’s Book. 4th edition. D. J. Wallace. Oxford University Press, 2011. (NOTE: A new, updated edition should be available in 2022. This book is excellent and is certainly the most comprehensive book written about Sjögren’s syndrome. However, it is written for both health professionals and patients. Therefore, much of the information is highly technical and written at a physician level. This book is for those who want to know as much as possible and who can read at a postgraduate level.)
When Lupus Throws You For A Loop: A Handbook For The Newly Diagnosed, Lupus Veterans, And For Those Who Love Them. D Oram MSW ACSW. 2017.
Women, Work, and Autoimmune Disease: Keep Working, Girlfriend! J. Friedlander and R. Joffe. Demos Health, 2008.
You Can Cope with Peripheral Neuropathy: 365 Tips for Living a Full Life. M. Cushing. ReadHowYouWant, 2009.
Other Sources of Patient Education
About Herbs, Botanicals & Other Products
Website of Memorial Sloan Kettering
American Academy of Medical Acupuncture
American Massage Therapy Association
Association for Applied Psychophysiology and Biofeedback
Website of the National Council on Patient Information and Education
Tests over-the-counter supplements
Drug Guide (Arthritis Foundation)
Health A to Z, National Health Service
Med Help International
National Center for Complementary and Alternative Medicine, National Institutes of Health
National Center for Homeopathy
The National Center on Physical Activity and Disability
National Certification Commission for Acupuncture and Oriental Medicine
Office on Women’s Health
RxList (The Internet Drug Index)
COMMENTS: Did I miss an important resource? Any mistakes? Please let me know in the comments below