Patient Resources

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.

 

NOTE: If I missed any important patient resources, financial aid, lupus patient advocacy groups, educational websites, lupus blogs or forums, excellent books about lupus, please COMMENT BELOW at the bottom of the page

Lupus patient advocacy is very important; join your local group!

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

http://www.kaleidoscopefightinglupus.org/

Looms for Lupus

https://looms4lupus.org/

Lupus Alliance of Upstate New York

http://www.lupusupstateny.org/

Lupus and Allied Diseases Association, Inc.

https://www.ladainc.org/

Lupus Foundation of America, Inc.

www.lupus.org/

Lupus Foundation of New England

lupusne.org

Lupus Foundation of Southern Arizona

http://www.lupus-az.org/

Lupus LA

http://www.lupusla.org/

Lupus Research Alliance

www.lupusresearch.org/

 

 

Lupus Patient Advocacy Groups (Worldwide)

APS Support UK (formerly the Hughes Syndrome Foundation)

aps-support.org.uk/

BC (British Columbia, Canada) Lupus Society

https://www.bclupus.org/

Dubai Lupus Foundation

https://www.facebook.com/groups/2474905813/

Guyana Lupus Plus Foundation, Inc

https://www.facebook.com/Guyana-Lupus-Plus-Foundation-Inc-668392993524445/

International Sjögren’s Network

https://www.sjogrens.org/living-with-sjogrens/support-groups-networks/international-sjogrens-network

Lupus & Autoimmune Diseases Support Zimbabwe

https://www.facebook.com/lupusandautoimmunesupportzim.zw/

Lupus Association of Antigua and Barbuda

https://www.facebook.com/FIGHTODAYFORYOU/

Lupus Association Singapore

https://www.facebook.com/lupusassociationsg/

Lupus Association of Tasmania

https://www.lupustasmania.org.au/

Lupus Australia, Queensland, Inc.

https://www.facebook.com/Lupus-Association-Queensland-88949958464

Lupus Canada

lupuscanada.org

Lupus Europe

www.lupus-europe.org

Lupus Foundation of Dominica

https://www.facebook.com/LupusFoundationOfDominica/

Lupus Foundation of Fiji

https://www.facebook.com/groups/325496351655210/

Lupus Foundation of Grenada

https://www.facebook.com/lupusgrenada/

The Lupus Foundation of Guyana

https://www.facebook.com/thelupusfoundationgy/

The Lupus Group of Western Australia

www.lupuswa.com.au

Lupus Group Ireland

www.lupusgroupireland.com/

Lupus Association of New South Wales

www.lupusnsw.org.au

LUPUS Foundation of Africa

https://www.facebook.com/lupusfoundationofafrica/

Lupus Foundation of Bangladesh

https://www.facebook.com/lupus.org.bd/

Lupus Foundation of Jamaica

https://www.facebook.com/Lupusfoundationjamaica/

The Lupus Foundation of Kenya

https://www.facebook.com/LupusFoundationOfKenya/

Lupus Foundation of Nigeria

https://www.facebook.com/Lupus-Foundation-of-Nigeria-114813066595305/

The Lupus Foundation of Uganda

https://www.facebook.com/The-Lupus-Foundation-of-Uganda-1615287978791096/

Lupus Society of Nepal

https://www.facebook.com/lupussocietyofnepal/

Lupus Society of Trinidad and Tobago

https://lupustt.org/

Lupus Trust of New Zealand

www.lupus.org.nz

Lupus UK

www.lupusuk.org.uk

Lupus Victoria (Australia)

www.lupus-support.org.uk

Malaysian SLE Association

http://lupusmalaysia.org/

St. Kitts and Nevis Lupus Awareness

https://www.facebook.com/SKNLUPUSAWARENESS/

World Lupus Federation

worldlupusfederation.org/lupus-groups-around-the-world

ALL IN For Lupus Nephritis

https://www.allinforlupusnephritis.com/

Centers for Disease Control and Prevention (CDC)

www.cdc.gov

GSKPro For Health Professionals: Systemic Lupus Erythematosus

https://gskpro.com/en-us/therapy-areas/systemic-lupus-erythematosus/

Health Information

www.niams.nih.gov/health_info

Information on various diseases by the National Institutes of Health (NIH)

The Johns Hopkins Lupus Center

www.hopkinslupus.org

The Johns Hopkins Sjögren’s Center

hopkinssjogrens.org/disease-information

The Johns Hopkins Vasculitis Center

www.hopkinsvasculitis.org

The Lupus Encyclopedia

www.lupusencyclopedia.com

Lupus News Today

www.lupusnewstoday.com

Mayo Clinic

www.mayoclinic.com/health/lupus/DS00115

Medical News Today

www.medicalnewstoday.com/categories/lupus

MedlinePlus (National Library of Medicine)

https://medlineplus.gov/lupus.html

Medscape

www.emedicine.com

The Merck Manual: Home Health Handbook

https://www.merckmanuals.com/home

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

www.niams.nih.gov

UpToDate

www.uptodate.com/home/uptodate-benefits-patients

US Food and Drug Administration (FDA)

www.fda.gov

Us In Lupus

https://www.usinlupus.com/

VeryWell Health

https://www.verywellhealth.com/lupus-4014693

WebMD

https://www.webmd.com/lupus/default.htm

Lupus Blogs and Forums

Charla de Lupus

www.hss.edu/charladelupus.asp

Despite Lupus: Living Well with a Chronic Illness

www.despitelupus.blogspot.com

Lupus In Color

Lupusincolor.com

London Lupus Centre Blog

www.londonlupuscentre.com/blog

Lupus Chick

www.lupuschick.com

Lupus Connect by The Lupus Foundation of America

www.inspire.com/groups/lupusconnect/

Lupus Corner

www.lupuscorner.com

Lupus Encyclopedia

www.lupusencyclopedia.com

Lupus Hope

www.lupushope.org

Lupus in Flight

Lupusinflight.com

LupusLine

https://www.hss.edu/lupusline.asp#:~:text=LupusLine%C2%AE%2C%20begun%20in%201988,trained%20volunteers%20who%20have%20lupus.

866-375-1427

Talk to counselors about lupus

Lupus Rebel

www.lupusrebel.com/blog

The Lupus Site Forum

www.thelupussite.com

Lupus Warriors on Facebook

www.facebook.com/groups/lupuswarriors

Mary’s Page: Living with Lupus

maryspagelivingwithlupus.blogspot.com/

More Than Lupus

Morethanlupus.com/blog

More Than My Lupus

www.morethanmylupus.com

My Lupus Team

www.mylupusteam.com

Reddit Lupus Forum

www.reddit.com/r/lupus

Sjögren’s World

www.sjogrensworld.org/forum

We Have Lupus

Wehavelupus.com

Sjögren’s World Forum

https://sjogrensworld.org/forums/

Smart Patients

www.smartpatients.com/communities/lupus

UMass Lupus Blog

umassmed.edu/lupus/blog/

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

www.aarda.org

Antiphospholipid Syndrome Foundation of America

www.apsfa.org

MCTD Foundation

http://mctdfoundation.org/

The Myositis Association

www.myositis.org

Scleroderma Foundation

www.scleroderma.org

Sjögren’s Foundation

www.sjogrens.org

The Vasculitis Foundation

www.vasculitisfoundation.org

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

www.aakp.org

American Chronic Pain Association

www.theacpa.org

American Heart Association

www.heart.org

American Kidney Fund

www.kidneyfund.org

American Liver Foundation

www.liverfoundation.org

American Lung Association

www.lung.org

American Thyroid Association

thyroid.org

Arthritis Foundation

www.arthritis.org

Creaky Joints

www.creakyjoints.org

Fibromyalgia Network

www.fmnetnews.com

National Adrenal Diseases Foundation

https://www.nadf.us/

National Fibromyalgia Association

www.fmaware.org

National Health Council

www.nationalhealthcouncil.org

National Kidney Foundation

www.kidney.org

National Organization for Rare Disorders

www.rarediseases.org

National Osteoporosis Foundation

www.nof.org

National Stroke Association

www.stroke.org

Pulmonary Hypertension Association

www.phassociation.org

Raynaud’s Association

www.raynauds.org

Sleep Foundation

www.sleepfoundation.org

U.S. Pain Foundation

www.uspainfoundation.org

Groups to Help Families and Caregivers

CaringBridge

caringbridge.org/about-us

Create your own website on your personal journey living with lupus

Family Caregiver Alliance

www.caregiver.org

National Alliance for Caregiving

www.caregiving.org

Well Spouse Association

www.wellspouse.org

Offers support to spousal caregivers

Lupus Research and Patient Registries

Alliance for Lupus Research

www.lupusresearch.org

Center Watch

www.centerwatch.com

Clinical Trials in Lupus (Research Studies)

Center for Clinical Trials Education (Lupus Foundation of America)

www.lupus.org/clinicaltrials

Center for Information and Study on Clinical Research Participation

www.ciscrp.org

Lupus Research (New York University School of Medicine)

https://med.nyu.edu/departments-institutes/medicine/divisions/rheumatology/research/lupus-research

National Institutes of Health

www.clinicaltrials.gov

clinicalstudies.info.nih.gov

Rheumatology Research Foundation of the American College of Rheumatology

http://www.rheumatology.org/foundation/default.aspx

Search Clinical Trials

www.searchclinicaltrials.org

The SICCA International Registry (Sjögren’s Syndrome, Johns Hopkins Hospital)

hopkinssjogrens.org/research/sicca-project/

Sjögren’s Clinic, National Institute of Dental and Craniofacial Research

https://www.nidcr.nih.gov/health-info/sjogrens-syndrome

301-435-8528

Disability and Employment Assistance

ADA Disability and Business Technical Assistance Centers

Disabilityinfo.org

Americans with Disabilities Act

www.ada.gov

Benefits.gov

www.benefits.gov

Disability.gov

www.disability.gov

Disability Rights Education & Defense Fund

www.dredf.org

Disability Workbook for Social Security Applicants. 8th edition. D. M. Smith and B. W. Smith. Demos Medical Publishing, 2012.

Employee Rights: Disability Discrimination

employment.findlaw.com/employment-discrimination/disability-discrimination

Website by findlaw.com

Hire Disability Solutions

www.hireds.com

How to Get SSI & Social Security Disability: An Insider’s Step by Step Guide. M. Davis, iUniverse, 2000.

Invisible Disabilities Association

www.invisibledisabilities.org

Job Accommodation Network

www.askjan.org

National Council on Disability

Ncd.gov

National Organization of Social Security Claimants’ Representatives

www.nosscr.org

Patient Advocate Foundation

www.patientadvocate.org

Sharon Christie Law: Your Law Firm for Social Security Disability Benefits free ebook- Can You Win Your Social Security Disability Case?

sharonchristielaw.com/guide-to-ssd/

Social Security Administration

www.socialsecurity.gov/applyfordisability

Disability application

Social Security Administration (The Work Site)

www.ssa.gov/work

Employment support

Social Security Disability and Disability Resource Center

(Application for disability)

www.ssdrc.com

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

www.hhs.gov

US Equal Employment Opportunity Commission

www.eeoc.gov

US Equal Employment Opportunity Commission

www.eeoc.gov/facts/ada18.html

Americans with Disabilities Act; Your Employment Rights

Financial Assistance (Prescriptions, Insurance)

Benefits.gov

www.benefits.gov

Blink Health

Blinkhealth.com

Discount Drug Network

discountdrugnetwork.com/

Giant Food Pharmacy Generic Prescription Savings

https://giantfood.com/pages/pharmacy-services/

GoodRX

www.goodrx.com

H-E-B Generic Savings

https://www.heb.com/static-page/Generics

HealthWell Foundation

Non-profit helping the underinsured (copays, deductibles, out of pocket costs, and more)

www.healthwellfoundation.org

High Risk Health Insurance Pools (National Association of Health Underwriters)

www.nahu.org/consumer/HRPGuide.cfm

HyVee Generic Savings

https://www.hy-vee.com/my-pharmacy/services/four-dollar-generics

Kroger Generic Drug Savings

https://www.krogersc.com/drugs

ModestNeeds.org

www.modestneeds.org/intro

NeedyMeds, Inc.

www.needymeds.org

Patient Advocate Foundation

www.patientadvocate.org

Pre-Existing Condition Insurance Plan

https://www.healthcare.gov/coverage/pre-existing-conditions/

Publix Pharmacy Medication Savings

https://www.publix.com/pharmacy/pharmacy-services/medication-savings

RiteAid Rx Savings Program

https://www.riteaid.com/pharmacy/prescription-savings

Ro Online Pharmacy

https://ro.co/pharmacy/

RxAssist Patient Assistance Program Center

www.rxassist.org

RxHope

www.rxhope.com

RxSaver

Rxsaver.com

Sams Club

https://www.samsclub.com/content/prescription-savings

ScriptSave WellRX

Wellrx.com

SingleCare

https://www.singlecare.com/

Target Generic Drug Savings

https://tgtfiles.target.com/pharmacy/WCMP02-032536_RxGenericsList_NM7.pdf

Together Rx Access Prescription Savings Program

www.togetherrxaccess.com

Walgreens Prescription Savings Club

https://www.walgreens.com/psc/prescription-savings-club

Walmart Prescriptions

https://www.walmart.com/cp/4-prescriptions/1078664

Winn Dixie Generic Drug Savings

https://www.winndixie.com/pharmacy/generics-list

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

800-222-6885

AstraZeneca patient assistance programs

800-292-6363

Aurinia Alliance (Lupkynis)

https://www.auriniaalliance.com/

Bristol-Myers Squibb

www.bms.com/products/Pages/programs .aspx

Genentech Patient Financial Support

https://www.gene.com/patients/financial-support

GlaxoSmithKline (GSK For You)

https://www.gskforyou.com/

Janssen CarePath

https://www.janssencarepath.com/

Johnson & Johnson Patient Assistance Foundation

https://www.jjpaf.org/

Lilly & Company (Lilly Cares Foundation)

https://www.lillycares.com/

Merck Helps

Merckhelps.com

Novartis Patient Assistance

https://www.novartis.us/our-products/patient-assistance

Ortho-McNeil-Janssen Patient Assistance Program (Janssen Care Path)

https://www.janssencarepath.com/

Pfizer Rx Pathways

https://www.pfizerrxpathways.com/

Roche Access To Healthcare

https://www.roche.com/sustainability/access-to-healthcare/ath_insurance_us.htm

Schering-Plough

https://www.patientassistance.com/profile/merckscheringplough-217/

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

www.eatright.org

American Academy of Dermatology

www.aad.org

American Academy of Neurology

www.aan.com

American Academy of Ophthalmology

www.aao.org

American Academy of Orthopaedic Surgeons

www.aaos.org

American Academy of Pediatrics

www.aap.org

American Board of Medical Specialties

www.certificationmatters.org

How to tell if your doctor is board certified

American College of Pediatricians

www.acpeds.org

American College of Physicians

www.acponline.org

American College of Rheumatology

www.rheumatology.org/

American Medical Association

www.ama-assn.org

American Psychological Association

www.apa.org/helpcenter

American Society of Nephrology

www.asn-online.org

Asia Pacific League of Associations for Rheumatology

www.aplar.org

Canadian Rheumatology Association

www.rheum.ca

The European Lupus Society

www.sleuro.org

European Union League Against Rheumatism

www.eular.org

National Medical Association

www.nmanet.org

The largest and oldest organization representing African American health professionals in the United States

Pan-American League of Associations for Rheumatology

www.panlar.org

Medical Textbooks

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

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

www.mskcc.org/mskcc/html/11570.cfm

Website of Memorial Sloan Kettering

Acupuncture.com

www.acupuncture.com

American Academy of Medical Acupuncture

www.medicalacupuncture.org

American Massage Therapy Association

www.amtamassage.org

Association for Applied Psychophysiology and Biofeedback

www.aapb.org

Be MedWise

www.bemedwise.org

Website of the National Council on Patient Information and Education

ConsumerLab.com

www.consumerlab.com

Tests over-the-counter supplements

Drug Guide (Arthritis Foundation)

https://www.arthritis.org/health-wellness/detail?content=medication

Drugs.com

www.drugs.com

Healingwell.com

www.healingwell.com

Health A to Z, National Health Service

https://www.nhs.uk/conditions/

LabTests Online

www.medicinenet.com

Med Help International

www.medhelp.org

MedicineNet.com

www.medicinenet.com

National Center for Complementary and Alternative Medicine, National Institutes of Health

www.nccam.nih.gov

National Center for Homeopathy

www.homeopathic.org

The National Center on Physical Activity and Disability

www.ncpad.org

National Certification Commission for Acupuncture and Oriental Medicine

www.nccaom.org

Office on Women’s Health

www.womenshealth.gov

RxList (The Internet Drug Index)

www.rxlist.com

SafeMedication

www.safemedication.com

 

COMMENTS: Did I miss an important resource? Any mistakes? Please let me know in the comments below

 

 

2 thoughts on “Patient Resources

  • August 10, 2021 at 5:40 pm
    Permalink

    Hopewell Foundation
    https://www.healthwellfoundation.org/
    The HealthWell Foundation is a leading non-profit dedicated to improving access to care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. In 2020, we awarded more than $650 million in grants through our Disease Funds, and since 2004 we have helped more than 615,000 patients afford essential treatments and medications. HealthWell is recognized as one of America’s most efficient charities — 100 percent of every dollar donated goes directly to patient grants and services.

    Reply
    • August 10, 2021 at 8:21 pm
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      Thanks, Ms Davis! I added it; this additional lupus patient financial assistance information will certainly help others…. Donald Thomas, MD

      Reply

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