Resources for People Living with Lupus


 

What is Lupus?

Us in Lupus: https://www.usinlupus.com/

What is Lupus?: https://www.lupusresearch.org/understanding-lupus/what-is-lupus/

The 11 Criteria: https://www.lupusresearch.org/understanding-lupus/diagnosis-and-treatment/diagnosis/

How Lupus Affects the Body
http://www.mollysfund.org/living-with-lupus-in-what-ways-can-lupus-affect-the-body/

The Spoon Theory: This provides a simple approach to explaining how lupus affects a person with lupus' life, visit YouTube: http://www.youtube.com/watch?v=jn5IBsm49Rk

The Lupus Companion
http://lupusliqueens.org/the-lupus-companion-a-free-app-to-help-you-keep-track-of-your-lupus-care
A Free App to Help You Keep Track of Your Lupus Care. A free new app, the Lupus Companion, developed as part of the Lupus Initiative, has just been released to help people with lupus keep track of their medications, appointments and symptoms. Developed by doctors and patients, the app includes a short questionnaire designed to be taken every three months to help monitor disease activity.

Lupus and UV from Sun, Flourescent Lights & CFL Lights

see related forums under "Social Media, Lupus Forums & Blogs" below

US Sunscreens Highlights from Environmental Working Group (EWG)
(all people with lupus should wear sunscreen everyday indoors and outdoors)
http://www.ewg.org/sunscreen

SunGuard Wash-in Sun Protection
http://www.sunguarduv.com/

NEW! 10 Wearable Ways to Protect Yourself
http://www.resources.lupus.org/entry/10-wearable-ways-to-protect-yourself-outdoors

NEW! Accommodation Ideas for Photosensitivity
https://askjan.org/soar/other/photosensitivity.html

Accommodating People With Lupus | Job Accommodation Network:
A Service of the U.S. DOL Office of Disability Employment Policy
http://askjan.org/media/lupus.html

Decreasing UV exposure from fluorescent lights
http://www.lupus.org

Abstract of Study: Fluorescent light activates...Implications for patients with systemic lupus erythematosus
http://www.ncbi.nlm.nih.gov/pubmed/8037497

Naturalux Flourescent Lighting Filters
www.naturalux.com
NaturaLux™ Filters are designed to absorb the damaging UV rays from fluorescent lamps that can trigger lupus health "flare-ups." Additionally, Inspired Concepts and Inspired Sales are proud to be working with lupus organizations to educate and to help provide relief for those who suffer from lupus.
951.735.6285
info@naturalux.com

Medical & Health Insurance Assistance

Social Security and Disability Resource Center
http://www.ssdrc.com
The Social Security and Disability Resource Center website (www.SSDRC.com) is written by a former disability examiner and addresses questions that claimants often have about the application and appeal process but, often as well, have trouble finding clear answers to.

Additional links:

Social Security Disability SSI and Filing based on Lupus:
http://www.ssdrc.com/ssd-ssi-lupus.html

Lupus, Social Security Disability, and Applying for Benefits
http://www.ssdrc.com/condition-lupus.html

California Medical, Insurance, and Health Benefits Resource List [PDF]
http://www.sflupussupport.org/resource-sheet.pdf
Compiled by the LFNC. This informative PDF document includes brief descriptions and contact information for the following resources: Medicare, Medi-Cal, Major Risk Medical Insurance Program (MRMIP), Pre-Existing Conditions Insurance Plan (PCIP), Free Prescriptions, County Free Clinics, and Social Security Disability.

NEW! Disability Rights and Accessibility Links [PDF]
http://www.sflupussupport.org/Disability-Rights-and-Accessibility.pdf
Compiled by Caroline Hampton of OpenEducators.org. This PDF document includes helpful links from guides to disability costs and personal finances, business travel tips, and to types of service dogs.

Healthplan One
http://www.healthplanone.com/healthinsurance/california
Link to health insurance options for the state of California.

Financial Resources: Healthcare »
Sidebar links to Social Security Disability, Medicare, Medicaid, Food Stamps, and Other Government Assitance Websites

Clinical Trials & Studies

NEW! BTKi-SLE Clinical Research Study
The BTKi-SLE Study is a global clinical research study looking at an investigational medication for people with SLE. The study will enroll about 432 people with SLE at approximately 168 study centers in 18 countries around the world. See if you may pre-qualify - take the pre-screener questionnaire »

23andMe »
At 23andMe, we believe your genetic data can play a critical role in shaping research. Knowing more about how genetics relate to disease can provide additional information on how people might respond to treatment, which may eventually lead to a cure. Understanding the underlying genetics of lupus could le ad to better diagnostics and more effective treatments with fewer side effects.

Belimumab (Benlysta®) Studies

Sanguine Biosciences »
Goal is to help accelerate the research process by making it easy for patients to participate in preclinical and clinical trials. In order to accomplish this, we’ve developed a unique model that uses a mobile force of phlebotomists across the country. A local phlebotomist goes directly to each patient’s home and draws your blood in a process, which usually takes under 30 minutes.

Our phlebotomist will then reimburse the patient $50 for their time and another $25 to a non-profit of their choice (more often than not, patients choose the organization that referred them in the first place, for example, Lupus Foundation of Northern California).

STEADY: STudy Evaluationg Alx-0061 (Ablynx) for moDerate to severe sYstemic lupus erythematosus »
No longer accepting participants. To assess the efficacy and safety of different dose regimens of Ablynx (ALX-0061) administered subcutaneously (s.c.) to subjects with moderate to severe active, seropositive SLE compared to placebo. Secondary objectives: To assess the pharmacokinetics (PK), pharmacodynamics (PD), immunogenicity, flare rate, steroid reduction and health-related quality of life, with different dose regimens of ALX-0061.

CLUES: California Lupus Epidemiology Study
CLUES is funded by the U.S. Centers for Disease Control and Prevention (CDC) to study lupus in the San Francisco Bay Area. The Alliance for Lupus Research is also contributing to funding this research. Dr. Lindsey Criswell, the lead researcher on the Lupus Genetics Project, is collaborating with Dr. Maria Dall'Era, Dr. Jinoos Yazdany, and Dr. Patricia Katz on this new project.

Alliance for Lupus Research Clinical Trials Info Page »
Provides education lists and pamphlet about clinical trials in general, current and local clinical trials, drugs in trial phase, and FAQs

Lupus Registry and Repository (LFRR)*
The LFRR is actively researching the different ways in which SLE affects various ethnic groups. Families with one or more living members diagnosed with lupus may be eligible.
Contact:
Domenique Williams 888-655-8787 toll-free or
Dominique-Williams@omrf.org
Seeking: + People with lupus and their families
               + Healthy participants
Asians with lupus and their families are encouraged to participate for a current study that is being conducted.

* The LFRR is sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS, a branch of the National Institutes of Health or NIH), They are the only research resource of multiplex lupus families in the world that scientists in the USA can apply to use in their own lupus research. See also Lupus Research Organizations below.

The Access Clinical Trial for Lupus Nephritis
http://lupusnephritis.org
Being diagnosed with kidney disease as a result of lupus (called 'lupus nephritis') brings new challenges... and new choices. This site is here to help you learn more about your diagnosis and about your options for treatment – including the option of participating in the ACCESS clinical trial.

Clinical Connection
http://www.clinicalconnection.com/clinical_trials/condition/lupus.aspx
By bringing both of our clients (Study Participants and Clinical Investigators) together we are able to revolutionize the Study Participant recruitment process in order to make it quicker, more accurate, and more personal than ever. The level of care, attentive service, and dedication to privacy that we provide will go beyond what is expected and our superior service will make us the leading Study Participant placement firm nationwide.

LFA Center for Clinical Trials Education (CCTE): http://www.lupus.org/clinicaltrials
Learn more about participating in clinical trials and find clinical trials taking place in your area.. Using the CCTE, you can find resources as well as ask questions about clinical trials or share your experience.

Lupus Research Organizations

Lupus Research Alliance (LRA)
www.lupusresearch.org
Combining the Alliance for Lupus Research, the Lupus Research Institute and the S.L.E. Lupus Foundation, the Lupus Research Alliance is a strong new champion for the lupus community. Collectively, our three organizations have already devoted more than 75 years to the cause and funded over $200 million in pioneering lupus research. By pushing the limits of scientific exploration and advancing research to new treatments, we seize every opportunity to transform the lives of all affected by this disease – patients, families, loved ones, and the entire lupus community.

Lupus Family Registry & Repository (LFRR)
http://lupus.omrf.org
The Oklahoma Rheumatic Disease Research Cores Center (ORDRCC) facilitates collaborative rheumatic disease research, providing cutting-edge technologies to address new clinically-relevant questions. It recruits investigators with other interests/training in rheumatic disease investigation and fosters the development of junior investigators to independent rheumatic disease research careers.

Clinical trial list: https://omrf.org/patient-studies/lupus-sle/clinical-trials/

The Lupus Initiative
http://thelupusinitiative.org
The Lupus Initiative® is a national education program designed to reduce health disparities experienced by patients with lupus. We develop educational resources for students and practitioners of medicine and the health professions – CME activities, case studies, a curriculum on lupus and health disparities, communication tools and more – to assist and support them in the diagnosis, treatment, and management of patients disproportionately affected by lupus based on race, ethnicity, and gender.

UCSF Lupus Clinic
http://www.ucsfhealth.org/clinics/lupus/
The Lupus Clinic focuses on the evaluation and management of systemic lupus erythematosus (SLE), particularly moderate to severe forms of the disease. The clinic has expertise in managing lupus nephritis and other organ-threatening manifestations of SLE. Doctors work closely with dermatologists, nephrologists and other specialists to collaboratively manage all aspects of this complex, systemic disease.

Local Organizations & Programs

The Lupus Foundation of Northern California (LFNC)
www.lfnc.org
The LFNC provides a variety of services to support and educate the community, particularly lupus patients, their families and the medical community. Visit this informative website and finda a number of services including conferences, books & articles, and other website resources.

UCSF Lupus Peer Support Group (for ages 15 - 23) [PDF]
Join the UCSF peer group and meet other teens and young adults with Lupus. Contact lupuspeergroup@gmail.com or lupus liaison and social worker, Mariel dela Paz at (415) 502-2019.

Nationwide Organizations & Programs

Lupus Foundation of America, Inc. (LFA)
www.lupus.org
The nation's leading non-profit voluntary health organization dedicated to finding the causes and cure for lupus. The LFA's mission is to improve the diagnosis and treatment of lupus, support individuals and families affected by the disease, increase awareness of lupus among health professionals and the public, and find the causes and cure. Research, education, and patient services are at the heart of LFA's programs. Blog: The Road to a Lupus Cure»

NEW! Lupus and Allied Diseases Association
http://nolupus.org
The Lupus and Allied Diseases Association, Inc., was founded in 1978 and is a national non-profit organization dedicated to enhancing quality of life for those impacted by lupus and allied diseases and other conditions of unmet need by fostering collaboration among stakeholders and promoting innovative advocacy, education, awareness and biomedical research programs. As a passion-driven, patient-focused association led by individuals with lupus and their loved ones, it is our goal to improve access to care and quality of life by supporting initiatives that lead to the discovery of better diagnostics, superior treatments, causes and cures.

NEW! Molly's Fund
http://www.mollysfund.org/
It is our mission to educate the public and inform the medical community about lupus, push for earlier, life-saving diagnosis for those afflicted, and to spur governments and foundations to fund research toward a cure.

American College of Rheumatology (ACR): www.rheumatology.org

Arthritis Foundation
www.arthritis.org
Visit this page and do a search on lupus. The site offers various abstracts and information related to lupus. The Arthritis Foundation is the only national not-for-profit organization that supports the more than 100 types of arthritis and related conditions with advocacy, programs, services and research.

Asian Health Services
http://www.asianhealthservices.org
A comprehensive community health center that provides medical care, health education, insurance counseling, and client advocacy in the underserved Asian and Pacific Islander (API) population in Alameda County.

Association of Asian Pacific Sommunity Health Organizationshttp://www.aapcho.org
A national association representing community health organizations dedicated to promoting advocacy, collaboration and leadership that improves the health status and access of Asian Americans, Native Hawaiians, and Pacific Islanders within the United States, its territories and freely associated states, primarily through our member community health clinics.

Centers for Disease Control and Prevention
Systemic Lupus Erythematosus (SLE or Lupus)
http://www.cdc.gov/arthritis/basics/lupus.htm

Cross Cultural Health Care Program
http://www.xculture.org
CCHCP serves as a bridge between communities and health care institutions to ensure full access to quality health care that is culturally and linguistically appropriate. Services include cultural competency training programs, interpreter information, and on-line library.

Fibromyalgia & Lupus
http://www.fibrolupus.org
Fibromyalgia & Lupus National Association is a 501c3 non-profit organization striving to promote fibromyalgia lupus awareness. FLNA advocates for quicker diangnosis and more effective treatments while driving for more scientific research funding. The goal is to help patients live a less painful life and empower patients to begin a healtheir lifestyle through diet, exercising, and stres reduction.

Hospital for Special Surgery: Lupus Programs
http://www.hss.edu/lupus-programs.asp
Hospital for Special Surgery offers free programs that reflect our comprehensive approach to care for people with systemic lupus erythematosus. Learn about your illness, learn to live more fully from health care professionals and from others who have the same illness. It offers the following programs:

The National Center for Complementary and Alternative Medicine (NCCAM)
http://nccam.nih.gov

The National Lupus Awareness Campaign
http://www.womenshealth.gov/lupus/

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
http://www.niams.nih.gov

The National Kidney Foundation
http://www.kidney.org

The Rheumatoid Arthritis Support Network (RASN)
The Rheumatoid Arthritis Support Network (RASN) is dedicated to providing up-to-date information and resources for rheumatoid arthritis patients. Our goal is simple. We want RA patients to know their options and fully understand their diagnosis. You can take steps, right now, to improve symptoms and your quality of life.
https://www.rheumatoidarthritis.org/about-us/

Scleroderma Foundation
The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status.  The foundation’s federal tax identification number is 52-1375827.  Our primary goal is to raise funds for our three-fold mission of support, education and research.  The foundation has 20 active chapters and 160 support groups across the country.
http://www.scleroderma.org

Sjogren's Syndrome Foundation
Founded in 1983 the SSF provides patients with practical information and coping strategies that minimize the effects of Sjögren's. In addition, the Foundation is the clearinghouse for medical information and is the recognized national advocate for Sjögren's.
http://www.sjogrens.org

Social Media, Lupus Forums & Blogs

SOCIAL MEDIA-------------------------------------------------------------

Facebook Group: Lighthouse for Lupus
Closed group, you will need to request to be added
https://www.facebook.com/groups/lighthouse4lupusCG/?fref=nf
The Lighthouse For Lupus Facebook Group is committed to providing a place that affirms and nurtures the creative spirit of each individual and provides the sharing of personal experiences of individuals who face living their lives with an incurable disease called Lupus.

HealClick
http://www.healclick.com
Online patient matching to help patients share treatment experience. Then they use all patient data for research.

NEW! LupusConnect™ by the Lupus Foundation of America
http://resources.lupus.org/media/lupusconnect
An online lupus community where individuals with lupus and their loved ones can engage with others like them to share experiences, find emotional support and discuss practical insights for coping with the daily challenges of the disease. It’s an easy-to-use, online platform that encourages its community members to ask questions, reply to posts and read about others' experiences in a safe and comforting community. 

MyLupusTeam
http://mylupusteam.com
MyLupusTeam is a social network and online support group for people who are living with lupus. MyLupusTeam gives you the easiest way to find the best team of providers and peers who are living with lupus. Share with others like you, and learn from their experience.

BLOG-------------------------------------------------------------------------

Caring Bridge: http://www.caringbridge.org
CaringBridge is a 501(c)(3) nonprofit providing free websites that connect family and friends during a serious health event, care and recovery.

A CaringBridge website is personal, private and available 24/7. It helps ease the burden of keeping family and friends informed. The websites are easy to create and use. Authors add health updates and photos to share their story while visitors leave messages of love and support in the guestbook.

FORUMS-----------------------------------------------------------------------

NEW! Forum: Support Group for Sun and Light Sensitive People: https://groups.yahoo.com/neo/groups/sun1/info

MDjunction - People Connecting People: http://www.mdjunction.com/lupus
Lupus Forum

We Have Lupus: http://forum.wehavelupus.com/forum.php
A well organized forum with topic discussions including newly diagnosed, symptoms, medications, and general questions.

Professional Services

NEW! Shunya Anding, CCPC
Certified Co-Active ProfessionalCoach
I coach people with chronic pain and discomfort and have worked with several people with autoimmune/lupus helping them shift their perspectives and choose their activities for living an easier, more fulfilling life.
Free intro session.
http://www.heartwisdomcoaching.com 

NEW! Erica Bridgeman
Independent Wellness Advocate
doTerra pure essential oils are revolutionizing the way families manage their health. We harness nature's most powerful elements and share these gifts through our global community of Wellness Advocates.
http://mydoterra.com/ericabridgeman
510.601.1770
*See how Certified Pure Therapeutic Grade Essential Oils can help you in Handouts section

Judy Burgio, R.Ph, C.N.
Registered Pharmacist, Certified Nutritionist
Judy Burgio has been well-known as a highly-skilled Integrative Health Specialist for over 20 years. In her private practice in Mill Valley, California, she sees clients in person and also conducts telephone consultations all over the U.S. and internationally. Combining her expertise as both a pharmacist and a nutritionist uniquely reflects her passion for optimal health and life-balance.
415.383.1908
http://www.judyburgio.com
*See her food plans in Handouts section

Mayah Hegre, EFT Practitioner, CMT
Emotional Freedom Technique Practitioner & Certified Massage Therapist
Mayah is a Emotional Freedom Technique (EFT) practitioner with a background in holistic health, 18 years as a licensed massage therapist, and former Co-owner/Director of Sophia Healing Center, she is passionate about health and bringing EFT out into the world. Her patient loving presence and personal experience with chronic illness makes her a great practitioner for those at their most vulnerable times. She is available to lead EFT circles for groups and private sessions in the SF Bay Area.
www.wellnessmentorsf.com

Jenny Mann, ND
Naturopathic doctor at San Francisco Preventative Medical Group
Dr. Jenny Mann’s approach in naturopathic medicine focuses on supporting the body’s innate ability to restore health. With an interactive intake, thorough physical exam, and conventional and alternative lab testing, Dr. Mann gathers information from many sources. She focuses on healthy diet, sleep, exercise and stress management as a foundation for balance in the body.
http://sfpmg.com/medicine/?page_id=1498
*See her food and other materials in Handouts section

Jyoti M. Rao, MFT
Pacific Psychotherapy of San Francisco
Help for chronic illness
870 Market Street, #469
San Francisco, CA 94102
415.677.2202
www.pacific-psychotherapy.com

Lane Ratchford, MA, CHt
Psychotherapist & Hypnotherapist
Lane Ratchford is a psychotherapist and certified hypnotherapist in San Francisco. She specializes in helping Lupus patients work with psychological aspects of the disease. As a former Lupus patient herself, she is intimately familiar with the experience, and is passionate about helping fellow Lupus patients live their best, fully-thriving lives. In her own and in her clients' lives, she has found psychotherapy to be a powerful resource that can significantly impact flares and symptoms. Call: 415.255.2524

Regan MOVES
Regan MOVES is a patent-pending, novel exercise and nutritional program designed to help those with chronic challenges improve the quality of their lives and get fit. Whether dealing with pain, a sports injury, limited motion or low energy, Regan MOVES makes exercise possible by maximizing motion of the body and minimizing joint exertion. It was created specifically so that those with chronic challenges such as lupus, MS, arthritis, fatigue, osteoporosis and other challenges could work out and get strong.
720.470.8049
Regan Moves email
http://www.mizunomoves.com
*See Three-Day Diet in Handouts section

Helpful Websites

NEW! Lupus and Women's Hair Loss
http://www.hairlossinwomen.org

Environmental Working Group (EWG)
The mission of the Environmental Working Group (EWG) is to use the power of public information to protect public health and the environment. EWG is a 501(c)(3) non-profit organization, founded in 1993 by Ken Cook and Richard Wiles. Find safe foods to eat, safest sunscreens, safest cosmetics.
http://www.ewg.org/

+ Guide to Sunscreens: http://www.ewg.org/sunscreen
+ Shopper's Guide to Pesticides in Produce: http://www.ewg.org/foodnews/

THE INTERNET CHAMBER OF COMMERCE LISTINGS
via Public Service Navigator

Handouts from Support Group Meetings & Education Days

The following contributions are PDF Documents unless noted.

NUTRITION-----------------------------------------------------------------------

Anti-Inflammatory Diet by Jenny Mann, N.D.

Gluten-Free Food Plan by Judy Burgio, R.Ph., C.N.

Gluten-Free Recommendations by Jenny Mann, N.D.

Good Fats/Bad Fats by Judy Burgio, R.Ph., C.N.

The Healthy Food Plan by Judy Burgio, R.Ph., C.N.

Holistic Nutritional Approaches for Lupus (2 MB)
presentation by Kandice Stellmon, C.N.

Mediterranean Diet Cuts Death From Chronic Diseases [website]
HealthDay Report

Certified Pure Therapeutic Grade (CPTG) essential oils from doTERRA by Erica Bridgeman, Wellness Advocate.

Three-Day Diet by Regan Moves

NEW! Compiled by Alicia Levin, Support Group Member

 

MIND, BODY, SPIRIT-----------------------------------------------------------

Breathing: An Introduction by Dr. Andrew Weil [website]
contributed by Susan Patick

Complementary Treatments by Susan Patick

Living Healthy with Lupus Bibliography by Susan Patick

 

ADDITIONAL LUPUS SUPPORT-----------------------------------------------

Lupus Hair Loss contributed by Sheila Matechuck

Naturopathic Doctor, Jenny Mann Handouts from Saturday, June 21

Self-Advocacy with Health Care Professionals by Maria gil de la Madrid

Self Management of Lupus presentation by Susan Patick

 

Do you have any lupus resources, such as books or articles, you'd like to share? Please feel free to contact us!