From Tweets to Threads: Exploring the Transforming Role of Social Media in the Lynch Syndrome Community


Over the years, I have found social media to be a powerful tool for connecting people with Lynch syndrome.

cartoon drawing of cancer survivor and blogger, Georgia Hurst

Social media, especially Twitter, can be a great place to share stories and seek guidance from fellow patients, survivors, caregivers and medical professionals. Moreover, social media can be a great way to keep up to date on the latest information about Lynch syndrome. However, with the social media landscape constantly evolving, it's important to consider how these changes may impact the Lynch syndrome community.

Lynch syndrome is the most common hereditary cancer syndrome that increases the risk of various early-onset cancers. The challenges and concerns that come with this syndrome can be overwhelming and finding a community that understands these struggles can be immensely helpful.

I have found that social media platforms such as Twitter, Facebook groups and Instagram have emerged as safe spaces for individuals living with Lynch syndrome. These platforms allow patients, survivors, and caregivers to share their experiences, offer advice, and provide emotional support. The camaraderie that develops within these communities is invaluable, especially for those needing such a support system in their immediate offline circles. Over the years, Twitter, now known as X, has been my favorite because more medical professionals, such as doctors and genetic counselors, utilize it more than other platforms, leading to more accurate medical information. But now I am torn about staying on X — X's new ownership, tone and style have become rather unsavory and I am rethinking my presence on X.

Historically, Twitter has been mainly instrumental in connecting Lynch syndrome individuals across the globe, specifically with hashtags like #LynchSyndrome and #HereditaryCancer and #GenCSM. #GenCSM (Genetic Cancer social media is part of the cancer tag ontology, which organizes hashtags to promote better cancer care for patients, caregivers, healthcare professionals and all with a stake in easing the global burden of illness and suffering. I co-created #GenCSM with certified genetic counselor Ellen Matloff and BRCA advocate Amy Byer Shainman to provide people with accurate information about hereditary cancer syndromes. While using these hashtags, people can easily find and contribute to conversations about medical updates, coping strategies and research findings while fostering a sense of understanding and community.

However, recent changes on X and shifts in user preferences have led me to explore social media alternatives. One alternative is Threads, a mobile-only platform. Threads users can read posts on but can't post or interact. X, in comparison, is accessible via desktop and the X app. As platforms come and go, I believe Lynch syndrome communities must adapt and explore new avenues to ensure strong connections. While transitioning from one platform to another can be challenging, it allows the Lynch syndrome community to adapt and enhance their networking capabilities.

The social media landscape is constantly evolving, new platforms are emerging and existing ones are experiencing shifts in popularity. While these changes can be exciting, they can also challenge established communities. These recent shifts on X have me raising questions about the platform's long-term viability for the Lynch syndrome community.

As social media preferences change, the Lynch syndrome community needs to be open to exploring new platforms that might better serve their needs. Transitioning to a different platform can be a chance to reinvigorate conversations, engage with a broader audience and find innovative ways to support one another.

To navigate the changing social media landscape for Lynch syndrome, I am currently researching various platforms. I think it would be helpful if a significant portion of the Lynch syndrome community migrates to a new platform; consider joining them to maintain connections and stay updated on discussions. With the social media evolution, putting only some of your eggs in one basket is best. Engaging on various platforms to diversify your connections and ensure that changes on one platform only disrupt your support network partially. As a patient advocate, sharing insights, tips and thoughts about new platforms is essential to help others navigate the transition.

Social media has transformed how individuals with Lynch syndrome connect, share and support one another. As an advocate for those with Lynch syndrome, I believe the evolving social media landscape introduces opportunities and challenges for the Lynch community. The recent changes on platforms like X and the emergence of new alternatives like Threads highlight the need for adaptability and open-mindedness.

Ultimately, the strength of the Lynch syndrome community lies in its ability to find ways to connect, regardless of the platform. By staying informed, embracing changeand supporting one another, individuals affected by Lynch syndrome can continue to find solace, share experiences and foster a sense of community.

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