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How Can We Help?

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. Kaleidoscope 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]

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    Financial and Legal

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    Medical: Caregivers & Resources

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    Research and Trials

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    Community and Awareness Building

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    Health Nutrition and Lifestyle

Financial and Legal Resources

211 Info

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.

Not in Oregon or Washington? Please click here to see if there is 211 service in your area.

NeedyMeds

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. The NeedyMeds Drug Discount Card may save you up to 80% off the cost of your prescriptions, OTC medications and pet prescriptions purchased from a pharmacy.

OKCoPay

OK Copay is a great resource especially for those uninsured or those who have high deductible plans, and will help you determine pricing or comparing healthcare providers.

Apply for Disability Benefits

Check to see if you are qualified for Disability Benefits through Social Security and learn what services you as a Lupus patient can benefit from.

Medical: caregivers and Resources

American College of Rheumatology

Find a Rheumatologist in your area that’s right for you through the American College of Rheumatology’s database.

The Arthritis Foundation

The Arthritis Foundation

The Arthritis Foundation‘s guide to causes, symptoms, and treatment for systemic lupus erythematosus. Learn More

National Center for Complementary and Alternative Medicine

National Center for Complementary and Alternative Medicine

NCCAM’s website provides access to the latest research and clinical guidelines on a wide variety of treatments. Learn More

Office on Women's Health

Office on Women's Health

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. Learn More

Healthline

Healthline

Informational website with focused efforts on offering readers and visitors objective, trustworthy, and accurate health information. Learn More

Hospital for Special Surgery

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:

Lupus Patient Support Program List
Lupus Chat: Connect, Support and Share
SLE Workshop: Support and Education Program
Lupus Line: National Telephone Peer Support Program

Medline Plus

MedlinePlus is a great source of lupus information and resources.
Learn More
 

Here is a great link for a medical tutorial on lupus:  Lupus Tutorial

Lupus and the Skin

Lupus and the Skin

The American Academy of Dermatology’s has a great tool to help you find a dermatologist near you for skin related lupus complications. Learn More

Us in Lupus

A great resource with symptom checklists, a journal tool and tips for speaking with your medical caregiver, generously provided by Glaxo Smith Kline. Learn More

Research and Trials

Lupus Research Alliance

The Lupus Research Alliance, the world’s leading private funder of lupus research, is a National Research & Advocacy Partner of Molly’s Fund Fighting Lupus. 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.

Learn More

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Antidote

Antidote is a digital health company on a mission to accelerate the breakthroughs of potentially life-saving treatments, by bridging the gap between medical research and the people who need it. Their clinical trials search makes it easy to quickly and efficiently sort through the trials listed in ClinicalTrials.gov to find the trials that might work best for you. Answer a few questions to find your matches.

Click here to find trials

Clincal Trials for Lupus

Search for clinical trials across the United States with this tool designed by the National Institutes of Health.

Click here to find trials

Community and Awareness Building

Rainbows for All Children

Rainbows for All Children is dedicated to being the premier source of support for all youth as they navigate grief and heal from loss, whether from death, divorce, deployment, or other trauma. Rainbows fosters awareness that youth require support to heal and provides resources and support to help guide youth in their grieving process.

Learn More

Lotsa Helping Hands

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.

Learn More

Health, Nutrition and Lifestyle

The Anti-Inflamatory Diet

Proponents of this eating plan argue that it can boost immunity, and ward off a number of infections, illnesses, and and maladies.

Unlimited Choices

Unlimited Choices is an Oregon-based non-profit agency, which provides accessibility solutions for the homes of people with disabilities.

Recommended Books and other Reference Materials

When Lupus Throws You For A Loop

When Lupus Throws You for a Loop is a handbook for those newly diagnosed, lupus veterans, and those who love them. It takes you on a journey to acceptance acknowledging the difficulty of incorporating lupus into your life.

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 Lupus

RELEASE 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

What Does Super Jonny do When mom Gets Sick?

Jonny is a little superhero with a big problem.

His Mom is sick.  How can he help? Join Jonny and Bear as they go to the hospital to investigate.

LEARN who the staff working in the hospital are and what they do. DISCOVER Jonny’s secret weapon. BECOME EMPOWERED to offer practical help to a sick person.

>Visit www.SickMom.org to learn more and purchase the book

Diary of a MAD Lupus Patient

Diagnosed during her high school years, the author decided to keep a personal diary of her confusion, fear, and challenges of being diagnosed with Lupus. Lupus, also known as Systemic Lupus Erythematosus (SLE) is a disease that can affect many different body systems, including the joints, skin, kidneys, blood cells, heart, and lungs. Lupus is more common in women than in men. Research continues to be done on finding a cure for this life-threatening illness. This diary records thoughts and feelings for being diagnosed, to understanding and accepting the reality of living life with Lupus.

Lupus Q & A

A perennial bestseller, Lupus Q&A is the go-to guide for sufferers of a chronic autoimmune disease that affects more than 1.4 million people in the United States alone. Characterized by achy joints and skin rashes, lupus often mimics other diseases, making it tricky to diagnose and treat. In this completely revised and updated edition, Dr. Robert Lahita and Dr. Robert Phillips—leading experts on lupus—discuss topics in a clear, concise, and easy-to-follow Q&A format.

If You Have to Wear and Ugly Dress, Learn to Accessorize

“Lupus and scleroderma are our shadows but they do not define us. We may have to wear the ugly dresses of chronic illness but we don’t have to be the ugly dresses.” — Linda and Karen

If you are experiencing a long-term illness or disability, this book is for you — as well as your family and friends. The authors share a collection of deeply personal stories and poetry to describe their journey from illness to health, well-being, and fruitful living. Their creative life management strategies provide a road map to help you.

The LUPUS Diet Plan

“Whether you are newly diagnosed with lupus or you have had the disease for decades, The Lupus Diet Plan is a must-have addition to your cooking and lifestyle book collection. The Lupus Diet Plan provides an excellent narrative that outlines easy ways to establish healthy eating habits and lifestyle choices while explaining the science behind the food.”
―Kelli Roseta, 26-year systemic lupus erythematosus survivor; Client Services Coordinator Kaleidoscope Fighting Lupus.

*All resources provided by Kaleidoscope Fighting Lupus 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.