Over decades of autoimmune patient advocacy, I have witnessed emerging patient voices in various diseases. Emerging patient voices in rheumatology focuses on the specialty that diagnoses and treats the most autoimmune patients. This emergence is supported by the new tools of the digital world, especially novel communication modes such as social media that enable communities.
Thus, my virtual-first, digital rheumatology clinic rheumission was built on a foundation specifically attuned to listening to emerging patient voices in rheumatology. We are building our unique patient-first strategy and have worked tirelessly to ensure a collaborative environment where patients truly feel heard. Part of employing this strategy has been engaging with communities.
Patient advocacy via online communities has been critical in reshaping the clinical landscape for patients. In particular, social media platforms have provided patients with platforms that support emerging patient voices in rheumatology. In particular, patients can advocate for themselves while engaging with, learning from, and educating others. Social media can also provide platforms for oft-ignored patient populations, including the voices of women and minorities. Specifically, they can create their own niches, promoting recognition of diversity within the rheumatology community.
Autoimmune Patient Communities
As an autoimmune patient myself, I know that the constant struggle to coordinate care and self-manage conditions can feel isolating and scary. However, many online patient communities offer community support from others undergoing similar struggles. We’ve gathered a list of groups that we think would be worth checking out. These vary in size and specificity of focus, so you’ll likely find a niche that fits you!
Autoimmune and Single-Disease-Focused Patient Communities
Online Groups
Smart Patients hosts more than 100 patient communities on a wide variety of medical topics, patients sharing their knowledge, an underutilized resource. They have a general “Autoimmune” community and many specific autoimmune and related disease topics such as rheumatoid arthritis, lupus, and fibromyalgia. Additional topics include medications, symptom clusters like POTS & dysautonomias, neurodegenerative diseases, cancers, and more.
RheumatoidArthritis.net has been around since 2013, and it’s a comprehensive website that provides access to community forums, health resources, blog posts, and general information about RA. You can also message patient advocates and seek additional educational resources.
Health Union is the parent of RheumatoidArthritis.net. They have links to many other communities for different conditions and diseases at the bottom of their home page, which functions for meaningful conversations surrounding patient health.
MyHealthTeam provides access to many different social networks for different conditions and diseases. These large-scale communities offer patients the opportunity to get their questions answered, read up on relevant medical articles, and converse with each other.
Facebook Groups
Facebook groups include many patient communities. These offer people with medical diagnoses opportunities to connect, educate themselves and others, and find a community that shares their experience.
The Rheumatoid Arthritis Forum Support Group posts a wide range of content from tips to alleviate chronic pain to sharing experiences. This is a highly active Facebook group with over 9,000 members, where people post and respond daily to each other.
This group, composed of nearly 8,000 members, specifically caters to mothers who struggle with RA. The community is focused on helping mothers with pain and disease management while caring for children, offering a space to vent frustrations and seek support and help.
This Facebook group is a supportive community of over 40,000 individuals with RA and their loved ones. It offers a platform for sharing experiences, offering support, and exchanging information about coping strategies and managing symptoms. This is a private group, so you must join and then wait to be accepted by the admin.
This group comprises a wide community of people with psoriatic arthritis, particularly those who choose to “LIVE WITH” it, while also offering a space for those who may know someone with the condition. Comprising around 4,000 people, this group is intended as a space of encouragement and resource-seeking.
This is a Facebook group of about 20,000 members and is a community where people can share their stories about their PsA journeys, in addition to seeking advice/help from others.
Consisting of about 10,000 people, This support group for those living with psoriatic arthritis is private, so you must wait for approval before officially joining.
The goal of the Lupus Support group is to provide help, empathy, advice, and support for people living with Lupus. This is a private group, so you will have to get permission to join from the admin.
Living with Lupus supports over 12,000 individuals navigating their Lupus journey. Like other pages, this is a private group where you must get approval before joining.
Reddit Communities
Although more idiosyncratic than other platforms, Reddit can also be useful for patients, with a few unique advantages. Reddit communities’ diverse and idiosyncratic user bases, and up/downvoting system promotes the most popular information to show you first. It would be wise to fact-check anything you read on Reddit (true for other platforms, too, if less so).
This subreddit provides a supportive environment for individuals living with RA and related inflammatory diseases. While it does not offer medical advice, it fosters discussion and community among members. Research posts also must be approved by moderators before being shared.
This forum, with over 30,000 users, supports people with Lupus to connect, share experiences, and build a community. While it welcomes those seeking diagnosis, individuals with other autoimmune conditions, caretakers and loved ones, it prioritizes lupus patients, maintaining respect in a safe space for everyone.
This subreddit has over 20,000 members; most users discuss their symptoms and experiences with medical treatment. This forum provides advice, support, and care but does not diagnose, interpret test results, or provide medical advice.
Growing strong at nearly 50,000 users, this forum serves as a platform for discussing various aspects of psoriasis. These include sharing personal experiences, seeking advice, and offering support. While all posts are welcome, see the usual disclaimer about medical advice; individuals are encouraged to consult doctors for guidance.
This subreddit, composed of 13,000 members, is a place for people to learn more about PsA. It also offers a platform relate to others with PsA wherever they are in their health journeys.
For Rheumatologists
For practicing rheumatologists, some communities support communications with other practitioners to share different perspectives.
Rheumatology.org is the official website of the American College of Rheumatology (ACR). It is a comprehensive resource hub for professionals and patients interested in rheumatology. It provides a wide variety of information on rheumatic diseases. For example: research updates, clinical guidelines, educational materials, and professional development for rheumatologists and other healthcare providers. Additionally, it offers resources and support for patients. For example, information about various rheumatic conditions, treatment options, and tips for managing symptoms.
This Facebook group is dedicated to rheumatologist physicians or fellows to provide mentorship for individuals in private practices. This intends to inspire current and future rheumatologists to start and continue within their specialty. This is a private group so you must get approval before you join.
The Rheumatology group gives physicians and healthcare professionals interested in rheumatology and clinical immunology a forum for collaboration. It provides an opportunity for rheumatologists and other medical professionals to connect, share information, and announce relevant news. Additionally, non-medical individuals are welcome to join, ask questions, and contribute comments. This is a private group, so one must obtain permission to join.
This Facebook group is mainly for rheumatologists and other specialists to connect and collaborate. Medical students and patients are welcome to join, but all must get admin approval to join.
Conclusion
Patient communities offer invaluable support and resources for individuals navigating similar health challenges. Whether on Facebook, dedicated websites, or platforms like Reddit, these communities foster connection and understanding. I wholeheartedly encourage joining these groups to facilitate meaningful exchanges of information and encouragement throughout your autoimmune journey!
Online communities and social media influencers have provided new platforms for patient voices. Such innovations allow individuals to amplify their voices and connect with communities. Rheumission aims to utilize the power of these influencers and their communities in our innovative, specialized patient-first approach. Stay tuned as rheumission continues its launch phase!
Furthermore, we encourage you to discover strong voices in the community: patient influencers. We encourage AIID influencers and patient advocates to discuss their perspectives [LINK TO INFLUENCER POST] and views on care management. Hearing from patients, especially public advocates, helps us speed diagnosis and improve care.
1 Comment
Why Autoimmune Disease is a Women's Health Issue – Autoimmune Connect · August 6, 2024 at 9:07 pm
[…] To improve awareness & diagnosis, autoimmune patients, particularly women, must amplify their patient voice. Patient advocacy and receptive medical professionals are critical in reducing medical gaslighting, […]