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Autoimmune Stories:

Takeaways from Autoimmune Disease Awareness Month

April 2021

Autoimmune Disease Awareness Month is celebrated annually during the month of March! 
There are millions of people worldwide who are living with one or more autoimmune diseases. For the majority of these individuals, the toll of having a chronic condition reaches far beyond their physical health. The struggle of living with an autoimmune disease can manifest in nearly every aspect of daily life. That’s why we launched a month-long social media event to share important facts, discuss lived experiences, and speak out about the impact of autoimmune disease.

We asked our Instagram community to tell us about their autoimmune disease experience

There are 80-100 known autoimmune diseases. Most of the individuals surveyed on day two of our awareness event had Hashimoto’s thyroiditis. Systemic lupus erythematosus (SLE), Sjögren’s, celiac disease, ankylosing spondylitis, and rheumatoid arthritis were all slightly more common among survey participants, with several people reporting that they have an undiagnosed autoimmune disease. 

Rare autoimmune diseases were reported, including myasthenia gravis, immune thrombocytopenia, dermatomyositis, and more. 

These results do not necessarily reflect universal autoimmune disease prevalence, but they do provide an interesting representation of our Instagram community.

Purple, blue, and gray pie chart: Autoimmune diseases reported by Instagram Poll Responders

List of other autoimmune diseases and related conditions

Other autoimmune diseases, related conditions, and suspected ADs reported by Instagram poll responders.

Many people spend years waiting to be diagnosed with an autoimmune disease. The majority of people who answered our poll waited 3 years for a diagnosis from the onset of their illness. Several more waited between 6 months and 4 years, with the longest reported delay being 38 years.

The length of time between symptom onset and diagnosis of autoimmune disease according to Instagram poll responders.

Autoimmune disease looks different on everyone, but common experiences unite this community. That’s why we asked our Instagram friends to share their experiences with us. The responses were candid, insightful, and inspiring. Here are a few of the things that participants shared with us:

Blue text on light blue background with colorful thought bubbles: What do you wish people would understand about your illness?

Keeping the momentum going 

When it comes to autoimmune disease, solutions take time and extraordinary dedication. Researchers, advocacy groups, spoonies, caregivers, and foundations are just a few parts of the movement to promote education, research, and improvements in diagnosis and treatment. A collective goal of the autoimmune disease community is to help others feel supported and seen. No matter where you are on your chronic illness journey, your voice counts! You can help keep the momentum for autoimmune disease awareness going all year long. Here are some tips for raising awareness: 

  • Stay connected with the Global Autoimmune Institute and with other organizations for news and upcoming awareness events.
  • Keep using your voice to continue the discussion about autoimmune disease across social media and within your community. 
  • Remember, your experience is incredibly valuable. There are many ways to share your autoimmune disease story. We created a resource complete with prompts and suggestions for telling your story, and we are also available to help with the process. Send us a message if you are interested in having your story featured on our social media pages. 

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