Our Resource Center
Navigating the challenging world of lupus can be daunting and confusing. Valuable resources for education, support, and financial/legal assistance are plentiful but can be difficult to filter. Molly’s Fund Fighting Lupus is continually updating and vetting a list of internet resources for education, support, and financial or legal assistance, among other topics. Please let us know if you have suggestions to add to these resources, or links you have found useful. Contact us at [email protected].
Financial and Legal
211 Info is a great resource for Oregon and SW Washington State. Just dial 211 on your phone, and a representative will help connect you with a wide variety of health and community services. You can also visit http://211info.org/oregon-211-network/regional-hubs to see if there is 211 service in your area.
Our Client Assistance Program is managed by Catholic Charities Financial Wellness Services. To learn more, please click the link below.
Apply for Disability Benefits
Disabilty Benefits through Social Securityhttp://www.ssa.gov/disability/
Social Security Disability Help for lupus patients informationhttp://www.disability-benefits-help.org/disabling-conditions/lupus-and-social-security-disability
Get help finding low- or no-cost prescriptions through the Partnership for Presciption Assistance.
Click these links to find discounts on over 50,000 medicationswww.oregonrxcard.com www.medicinecoupons.net
Patient Assistance Program- RX Assist
Patient assistance programs are run by pharmaceutical companies to provide free medications to people who cannot afford to buy their medicine. RxAssist offers a comprehensive database of these patient assistance programs, as well as practical tools, news, and articles so that health care professionals and patients can find the information they need.http://www.rxassist.org/
Save Money on Medical Costs
Great resource especially for those uninsured- high deductible plans, pricing and comparing healthcare providers, anyone paying out-of-pocket for their healthcare.http://www.okcopay.com/
NeedyMeds is a national non-profit information resource dedicated to helping people locate assistance programs to help them afford their medications and other healthcare costs.
Medical: Caregivers and Resources
Lupus Symptom Checker
A great resource with symptom checklists, a journal tool and tips for speaking with your medical caregiver, generously provided by Glaxo Smith Kline.http://www.lupuscheck.com/
Web MD Lupus Centerhttp://lupus.webmd.com/
Handout on Health: Systemic Lupus Erythematosushttp://www.niams.nih.gov/HEALTH_INFO/LUPUS/DEFAULT.ASP
An excellent guide to lupus provided by the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
Hospital For Special Surgery
A great resource with many programs and services for lupus and other chronic illness patients. They also have links and downloadable PDF files in multiple languages. Here are some great links on their website:http://www.hss.edu/lupus-programs.asp http://www.hss.edu/CharladeLupus.asp http://www.hss.edu/SLEWorkshop.asp http://www.hss.edu/LupusLine.asp
Arthritis Foundation Guide to Systemic Lupus Erythematosushttp://www.arthritis.org/conditions-treatments/disease-center/systemic-lupus-erythematosus-lupus-sle/
The Arthritis Foundation’s guide to causes, symptoms, and treatment for systemic lupus erythematosus.
Lupus and the Skinhttp://www.aad.org/for-the-public/home
The American Academy of Dermatology’s has a great tool to help you find a dermatologist near you for skin related lupus complications.
MedlinePlus Lupus Information
MedlinePlus is a great source of lupus information and resources.http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=lupus&x=0&y=0
Here is a great link for a medical tutorial on lupushttp://www.nlm.nih.gov/medlineplus/tutorials/lupus/htm/index.htm
The Office of Women’s Healthhttp://www.womenshealth.gov/publications/our-publications/fact-sheet/lupus.html
WomensHealth.gov is an excellent women’s health resource, and a key sponsor of the “Could I have lupus?” campaign. Their downloadable Lupus Fact Sheet is a fantastic resource.
National Center for Complementary and Alternative Medicinehttp://nccam.nih.gov/health
NCCAM’s website provides access to the latest research and clinical guidelines on a wide variety of treatments.
National Institute of Health & Human Services
Free, multi-lingual printed information in PDF form on various health topics including lupus. You may order up to 10 different titles through their on-line form.http://niams.nih.gov/Health_Info/default.asp
Healthline’s Rheumatoid Arthritis Center
Focused efforts on offering readers and visitors objective, trustworthy, and accurate health information.
Research and Trials
Alliance for Lupus Research
As in all fields of scientific inquiry, lupus research has been greatly advanced by the pioneering studies of brilliant scientists — and the caring people who participate in clinical trials. In these studies, scientists and laypeople work together to find safer, more effective methods to diagnose, prevent, treat, and ultimately cure diseases.http://www.lupusresearch.org/lupus-research/clinical-trials.html#.UtRIOJ5dXns
They are a service dedicated to making clinical trials faster, simpler, and more focused on patient needs. They are working to facilitate the vital connections needed between patients and research teams because it is through this collaboration that progress can be achieved. They want you to be able to find, understand and connect with clinical trials available to you.http://trialreach.com/
National On-Line Survey of Treatment Preferences of Adult MS, RA, and SLE Patients
Researchers from California Northstate University’s College of Pharmacy, located in Rancho Cordova, CA, are looking for 100 participants (18yrs. or older) that have been diagnosed with either multiple sclerosis, rheumatoid arthritis, or systemic lupus erythematosus; have been regularly taking medications for their condition over at least the past six months; and are willing and able to provide their consent to participate in this online survey study.
The survey will take approximately 25 minutes to complete and all responses will be kept strictly confidential. At the completion of the survey, you will be provided the opportunity to enter your name into a drawing for one of five $25 gift cards; however, you are not obligated in any way to enter this drawing.
If you are interested in participating, please click here.
Clinical Trials for Lupushttp://clinicaltrials.gov/ct2/results?term=lupus&recr=Open
Search for clinical trials across the United States with this tool designed by the National Institutes of Health.
Lupus Research Institutehttp://www.lupusresearchinstitute.org/
The LRI funds novel lupus research.
The Embody Program
If lupus makes it difficult to live life without interruptions, there may be hope in the EMBODY program. This program is a clinical research study evaluating the safety and effectiveness of an investigational study medication in people with lupus. Though there is no cure, you may or may not see improvement in your lupus symptoms or a reduction in the amount of corticosteroids you need to control your symptoms.
To qualify for the EMBODY program you must meet the following criteria:
- At least 18 years of age
- Diagnosed with lupus
- Not pregnant or nursing
Community and Awareness Building
Lotsa Helping Handshttp://www.lotsahelpinghands.com/
Create a free of charge, private, web-based community to organize family, friends, neighbors, and colleagues during your journey with lupus. Easily coordinate activities and manage volunteers with our intuitive group calendar. Communicate and share information using announcements, messages boards, and photos.
Health, Nutrition and Lifestyle
Nicole Paxson Cosmeticshttp://nicolepaxson.com/default_npax.asp
Nicole Paxson produces a cosmetics line with a high level of sun protection for lupus patients.
Email: [email protected]
The Anti-Inflammatory Diethttp://www.webmd.com/food-recipes/features/anti-inflammatory-diet-road-to-good-health
Proponents of this eating plan argue that it can boost immunity, and ward off a number of infections, illnesses, and maladies.
Unlimited Choices is a Oregon-based non-profit agency, which provides accessibility solutions for the homes of people with disabilities.
Recommended Books and Other Reference Materials
All resources provided by Molly’s Fund are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.
The Fairy and the Wolf $12.95
The Fairy and the Wolf: A Story about Lupus
By Molly McCabe, Jaime Gault, and Nicole Lawry. Illustrated by Lily Pham.
A Children’s Story about Lupus:
Bobby learns that the mother he thought he knew has been afflicted with lupus. Follow him on his journey as he meets Lupus the wolf and how Miss Fairy guides him on his path to understanding lupus. This is a must-read for any family affected by this debilitating disease.
To purchase this book please email us at [email protected]
But Why? Lupus
By Alexis C. Rizzuto
But Why? Lupus explores a young person’s experience with the diagnosis of systemic lupus erythematosus (SLE), more specifically, lupus nephritis, SLE. This thoughtful book explores the stages from diagnosis through remission by allowing the reader to enter the lives of one family.You can purchase this book on Amazon, or email [email protected] for more information.
Lupus: My Constant Companion and Greatest Inspiration
New Author Sheds Positive Light on Living with LupusRELEASE DATE: OCTOBER 21, 2013. WORLDWIDE.
In the book: Lupus: My Constant Companion and Greatest Inspiration, a woman shares her journey of living with Lupus. Through gaining an awareness of the disease as well as the triggers at a physical, emotional and spiritual level, she was able to realize that almost every symptom, side effect and medication could be managed (and counteracted in some cases), which enabled her to regain much of the energetic life she once had. She provides concrete tools to support self-discovery for the reader to apply to their own life to achieve a sense of balance and become an active decision-maker towards their own well-being.
The Lupus Encyclopedia, A Comprehensive Guide for Patients and Families
By: Dr. Donald E. Thomas, Jr., M.D., FACT, FACR
The Lupus Encyclopedia is an authoritative compendium that provides detailed explanations of every body system potentially affected by the disease, along with practical advice about coping. People with lupus, their loved ones, caregivers, and medical professionals—all will find here an invaluable resource. Illustrated with photographs, diagrams, and tables, The Lupus Encyclopedia explains symptoms, diagnostic methods, medications and their potential side effects, and when to seek medical attention. Dr. Donald Thomas provides information for women who wish to become pregnant and advises readers about working with a disability, complementary and alternative medicine, infections, cancer, and a host of other topics.
Print out this flyer for a special 30% discount/order form: The Lupus Encyclopedia