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Searching for answers – Women with autoimmune conditions look to online communities for support 

February 29, 2024

Searching for answers – Women with autoimmune conditions look to online communities for support 



Women facing immunological disorders are increasingly using social media platforms to share their experiences with others in an effort to gain important insights about available medicines and treatment options, according to data provided by Talking Medicines’ PatientMetRx®.

Communities of tens of thousands of women are forming online as women use social media to discuss the reality of living with a wide range of immunological conditions from psoriasis to rheumatoid arthritis as well as the challenges of securing a timely and accurate diagnosis.

The PatientMetRx® data show that more and more women are talking about their medicines and other aspects of their illness with others who have similar conditions as they search – often desperately – for the right treatment options. In the case of one particular medicine for rheumatoid arthritis, there was a 273 percent increase in the number of women discussing their stories at the end of 2021 compared with 2015, the data reveal.

Diagnosing and treating autoimmune disorders, which are three times [1] more likely to affect women than men, can be particularly difficult. The causes of these diseases are often unclear and symptoms can be vague, causing frustration amongst those left unable to live normal lives due to the pain, fatigue, and debilitation caused by these conditions. In many instances, patients need to consult with a number of different doctors over many years before receiving a definitive diagnosis. It’s a process that can also heighten anxiety and distress amongst sufferers.

Often people with immunological disorders have to take a cocktail of medications at different times of the day in a bid to stop their immune systems from turning against their own bodies.

All of this can take its toll on the mental health of those battling these disorders as they feel increasingly isolated and burdened by their disease. According to one study conducted in 2013 using a Danish database and published online in JAMA Psychiatry, people with an autoimmune disease were 45 percent more likely to have a mood disorder, like anxiety or depression.[2]

One way of feeling less lonely and overwhelmed by the enormity of these conditions is to join support groups, as recommended by the Autoimmune Institute.

The PatientMetRx® data show that social media posts related to immunology are more likely to be more detailed and descriptive than posts on other disease areas, such as oncology or cardiovascular disease, further underscoring the need for healthcare marketeers to listen intently to the lived experience of those sharing online.

[1] What’s causing the increase in global autoimmune diseases? | World Economic Forum (


Image sourced from Shutterstock: Image ID 185535655


About PatientMetRx®

PatientMetRx® is an AI accelerated machine learning platform that has turned the liberation of patient sentiment on its head through data science to create a single source of truth about feelings, attitudes, and behaviors. People describe their healthcare experiences through stories on social media, interviews, and research. PatientMetRx® uses advanced data science and technology including its own specialized LLM’s (Drug-GPT™) to structure signals at scale to make the complex simple. Tracking actionable insights and mapping across the patient journey comparing HCP and Patient Voices.  Keep your finger on the pulse by putting the Patient Voice at the center of strategies. If you’re wanting to stay ahead of the curve in this rapidly changing industry then try it out today.


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