Talking openly about TGCT
Viviane, TGCT patient smiling
No two stories are the same
Living with tenosynovial giant cell tumor (TGCT) looks different for everyone. Your symptoms may be debilitating or they may be manageable. Even though your symptoms are not always visible, they can impact many aspects of your life.1
Taking care of your mental health
Having unseen symptoms can be an isolating experience. You may feel like you need to hide what you’re going through because people might not understand or may treat you differently. Studies show that people with rare diseases are more likely to experience anxiety or depression. Know that you’re not alone.2-4
More than TGCT means that I am more than my diagnosis. The disease might slow me down, but I don't let it stop me.
– Rebecca, Living with TGCT
Rebecca, TGCT patient looking out a window
Rebecca, TGCT patient looking out a window
Mobile app screen for the TGCT and Me app
Keeping track of how you’re feeling
Remembering how your body felt yesterday—or last month—is not always easy. Take note of how you’re feeling using the TGCT & Me app, including your pain, stiffness, and mood. Share any patterns you notice with your care team so they can provide advice.
Share your story
Tell us about your experience with TGCT. Make sure to tag #MoreThanTGCT on Instagram.
References
1. Stern S, McKenzie PF, Bernthal N, et al. Localized and diffuse tenosynovial giant cell tumor: real-world results from a patient observational registry. Future Oncol. 2025;21(12):1501-1510. doi:10.1080/14796694.2025.2488635. 2. World Health Organization. Risks to mental health: an overview of vulnerabilities and risk factors. Published August 27, 2012. Accessed October 3, 2025. https://cdn.who.int/media/docs/default-source/mental-health/risks_to_mental_health_en_27_08_12.pdf?sfvrsn=44f5907d_10&download=true. 3. Shire. Rare disease impact report: insights from patients and the medical community. Published April 2013. Accessed October 3, 2025. https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf. 4. National Health Service England. Adult psychiatric morbidity survey: survey of mental health and wellbeing, England, 2014. Published September 26, 2016. Accessed October 3, 2025. https://digital.nhs.uk/data-and-information/publications/statistical/adult-psychiatric-morbidity-survey/adult-psychiatric-morbidity-survey-survey-of-mental-health-and-wellbeing-england-2014