AiArthritis logo showing stylized infinite loop symbol in red with black dots, above organization name for International Foundation for Autoimmune & Autoinflammatory Arthritis.

Living With an AiArthritis Disease

One of our co-founders, Kelly - person living with spondyloarthritis and part of our Community Awareness staff - likes to say, "Living with an AiArthritis disease isn't the end of the world, it's just another way of living in it."  We like to use this quote because it's a reminder that one important part of disease management is first understanding and accepting a 'new normal' (which may include learning how to manage tasks to conserve energy or minimize flaring later or how to communicate what you are experiencing to friends, family, and health professionals).


Regardless of how long you have been living with the condition, there's always new things to learn that can improve the journey. We hope to be your go to organization for these types of resources and that you become empowered by them to take charge of your journey.

For those living with AiArthritis diseases, you know there are MANY types of needs for resources that can help improve the disease journey. Those listed below are only a small fraction of the patient ideated resources we have been building at AiArthritis over the last decade. We will be working hard for the remainder of 2024 to continue adding resources, but in the meantime, check out some of those most requested by our patient and caregiver peers below. Also below you will find several recommended programs we lead that we recommend all patients and caregivers sign up for, as they are led by patients and provide the most cutting-edge information possible to ensure you are managing your disease in the best ways possible!

RESOURCES FOR the diagnosed

Mental Health is a Priority

Mental health awareness is crucial in autoimmune and autoinflammatory arthritis because the chronic pain, fatigue, and unpredictability of these diseases can significantly impact emotional well-being. Addressing mental health alongside physical symptoms ensures a more holistic approach to treatment, improving overall quality of life for patients.


If you are wondering where to start with treating your mental health,  download our patient-designed guidance below. Also, check out check out Episode 98 of our AiArthritis Voices 360 Talk Show, "Mental Health & AiArthritis Diseases".

Learn More

Support Tool

This guidance was developed in response to family members (significant others, siblings, children of parents with AiArthritis diseases) requesting help to manage their stresses, concerns, and emotional issues associated with caring for someone living with AiArthritis diseases. Complete this worksheet with your support network to learn about how you all can support each other!

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Eating to Decrease Inflammation

Trying an anti-inflammatory diet can be valuable for individuals with autoimmune and autoinflammatory arthritis, as it may help reduce inflammation, alleviate symptoms, and improve overall health. Incorporating nutrient-rich, anti-inflammatory foods can complement medical treatments and contribute to better disease management.


Check out our Community Chat on this topic and download the resource to learn about recipe ideas, foods to potentially avoid, and more!

Learn More

Managing My Disease

Check out these resources:


Have questions? Email us at info@aiarthritis.org

Talk Show Episodes For Those Living with an AiArthritis Disease

Living with an autoimmune or autoinflammatory arthritis diagnosis, managing the abundance of intricate medical information can feel overwhelming. While it’s essential to continue consulting with healthcare professionals, our AiArthritis Voices360 Talk Show—led BY PATIENTS—offers a valuable resource for individuals as they navigate life with their condition.


We have selected some episodes we think may help you in your ongoing journey:

  • Ep 8: Where Can Patients Have a Voice? EVERYWHERE!

    This week, join your host, Tiffany, as she and co-host Suz Schrandt talk about the variety of opportunities that exist for patients who want to become active in medical research, education, and advocacy. Regardless of your background, there are opportunities for you to get involved and help shape the future of medicine and science regarding autoimmune and autoinflammatory arthritis. Your voice matters, and you can make a difference. Pull up a chair to find out how to get started and where your journey could take you!



    Listen

  • Ep 12: Invisible Impact: AiArthritis Diseases

    Join Tiffany and Effie as they discuss the challenges of living with an invisible illness or disability. We hope this episode will be the first step to raising awareness and empathy for people suffering in silence. Our diseases start at the cellular level, so pain and other symptoms begin well before any damage.  This can cause those who can't "see" any injury or illness to assume a person is not as bad as they are saying they are. What experiences and challenges have you experienced due to invisibility?  Spend some time with Tiffany and Effie and then log on to social media to share your story!



    Listen

  • Ep 14: Rheumy Rounds™ : Office Visit Communication Obstacles - Dr. Google, Communication Tools, & When to Say Goodbye

    During this episode Tiffany Westrich-Robertson and Kelly Conway (patients) are joined by Dr. Al Kim ("Al", Tiffany's rheumatologist) and Jerik (from the universities research team) talk about some of the limitations doctors need to overcome in order to be more effective communicators and what patients can do to feel empowered to be more engaged in the conversations.


    RheumyRounds is a special series that unites patients and rheumatology professionals together "at the table", as equals, to discuss important topics that can improve healthcare journeys. Doctors are all called by first name only, because we are equals.

    Listen

  • Ep 41: Biomarkers - Diagnosis, Disease Management, & even PREVENTION?!

    In this episode, we talk about biomarkers, or a measurable indicator present in the blood or tissues, and how their presence in our bodies can predict disease severity and guide treatment development. Furthermore, evidence that identifying biomarkers early - BEFORE DISEASE ONSET - could actually prevent a person from developing the disease.  Now, there is still the environmental plus genetic factors to consider, but the findings are promising. 

    Listen

  • Ep 96: Social Wellness with an AiArthritis Disease

    In this episode, co-hosts Leila, Estela, and Kerry delve into the crucial topic of social wellness amidst living with AiArthritis disease. They explore the essence of social wellness, its significance and sharing personal insights on navigating social lives while managing health challenges. Join our co-hosts as they discuss both the supportive and challenging dynamics of maintaining an active social life with an AiArthritis disease and how online communities can positively impact social wellness. Drawing from community questions and experiences, they offer invaluable advice, practical tips, and thoughtful modifications to foster social fulfillment despite potential barriers. Tune in to learn how to prioritize social wellness in the face of chronic illness.


    Listen

Share Your Story & Get Involved!

Sometimes the best medicine is diving in to learn more, meeting those who have similar lived experiences, and doing activities that can help to improve your health and the AiArthritis community!

Share Your Story:

Your story is unique and can potentially help us to help other patients. Let us know what was the most difficult part about getting diagnosed? What would you want fellow patients to know about YOUR AiArthritis disease? Your patient-identified issues can aid us in creating patient-infused solutions.

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