Resources
I only wish that when I was first diagnosed with multiple autoimmune diseases, I had someone to point me in the direction of all the resources that exist out there for patients and caregivers. This is by no means a comprehensive list but here are a few I've found to be helpful to get you started!
Spoon Theory
The first time I read the "Spoon Theory" by Christine Miserandino, I cried. It finally felt like someone understood what I was going through.
Online Communities
Online support groups and communities
Browse Facebook for groups with patients and caregivers living with your condition. You may even be able to find specific groups for the medication you're on!
Parenting & Chronic Illness
Mamas Facing Forward endeavors to be a “one stop shop” for moms and moms-to-be who are living with chronic illnesses and have questions or concerns about pregnancy and motherhood
A place for moms with IBD to call their own!
Dating & Chronic Illness
What I've learned dating with a chronic illness.
IBD advocate Shawn Bethea shares how and when she talked about her chronic illness with her partner.
IBD advocate Natalie Hayden talks about navigating dating and chronic illness.
Patient Advocacy
The American Autoimmune Related Diseases Association is a non-profit dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity. They are a great educational resource and way to get involved in advocacy.
There are many patient advocacy organizations dedicated to specific conditions. The National Coalition of Autoimmune Patient Group lists a number of them.
Online Patient Advocates
There are thousands of amazing patient advocates sharing their stories via blogs, video, and social media. You can find them by typing in hashtags (i.e. #autoimmune #Crohns #Spoonie #chronicillness) and follow their journeys!
Traditional Medicine
Immunosuppressant drugs suppress, or reduce, the strength of the body’s immune system and are often used to treat autoimmune diseases. This article will give you an overview of the drugs and how they work.
Patients share what they wish they knew before starting a biologic (a common treatment for autoimmune diseases).
Common myths about biologics (Spoiler alert! They aren't as scary as you may think).
Care Team
Based in Pittsburgh, PA, the Autoimmunity Institute houses expert specialists. This is the premiere place for autoimmune patients to go particularly for undiagnosed, misdiagnosed, or patients living with multiple autoimmune diseases.
What to do when your doc doesn't believe you
IBD advocate Jacklyn Green shares her experience when her doctor didn't believe her and the steps to take when this happens.
Q's to ask when looking for right doctor
Cancer advocate Michele Tschirhart shares the 13 questions you should ask yourself when looking for the right doctor.
Complimentary Medicine
To help people identify the root causes triggering autoimmune diseases and inspire them to change the specific habits to help manage symptoms.
"Gold standard" for identifying foods that may fuel symptoms and contribute to inflammation. (For example, I've found I feel a lot better when I avoid gluten, dairy, and soy).
A list of recipes I've compiled over the years that cut out "inflammatory foods".
Other resources
Acupuncture, yoga, and supplements have also been recognized as complimentary treatment for autoimmune patients.
Financial Assistance
NeedyMeds is a national non-profit organization that maintains a website of free information on programs that help people who can't afford medications and healthcare costs.
Many pharmaceutical companies that make medications have Patient Assistance Programs to help you pay for your meds. You can use this database to search for assistance programs. (My biologic assistance program has helped get my meds down to $5 an injection!)
The PAN Foundation helps underinsured people with life-threatening, chronic and rare diseases get the medications and treatments they need by assisting with their out-of-pocket costs and advocating for improved access and affordability.
Your rights & affording treatment
IBD advocate Alison shares tips and tricks she's learned to help manage the administrative and financial burdens of chronic illness.
GoodRx provides prices and discounts for prescription drugs to save you up to 80%.
Health Insurance
Site to help you understand your health insurance rights.
Site to help you navigate selecting an insurance plan. Understand your options, get a recommendation, and enroll with ease.
Better makes it simple for anyone to get back the money their health insurance owes them. Because every minute you don’t have to spend on the phone with your health insurance company is a minute you can focus on what really matters.
Clinical Trials & Research
Clara helps walk you through the clinical trials process by recommending trials that could be a fit for you, and helping you take steps to enroll.
Autoimmune disease patient registry. Sign up to get notified about research studies you can get involved with.
Share your experience
Share your experience and give feedback on products and services healthcare companies are designing for patients like you...and earn money for sharing your expertise!
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