Three Generations of TN: Anne B. Ciemnecki on Advocacy, Research & Hope

What happens when trigeminal neuralgia runs through generations of a family?In this deeply personal and meaningful conversation, I speak with Anne B. Ciemnecki, MA, Secretary of the Board of Directors of the Facial Pain Association (FPA), about her lived experience with trigeminal neuralgia and how it shaped her path into advocacy and service.Anne shares what it has meant to grow up in a family where three generations have been affected by trigeminal neuralgia, and how witnessing the impact of this condition firsthand inspired her to become actively involved in supporting others facing neuropathic facial pain.Her journey is not only one of resilience but also of purpose.Today, Anne plays a key role within the Facial Pain Association, helping advance research and awareness, and currently leading the FPA Facial Pain Registry initiative—an important effort that gathers patient data to help researchers better understand neuropathic facial pain and improve treatment options.In our conversation we talk about:✨ Anne’s personal family experience with trigeminal neuralgia✨ What living with a rare and often misunderstood condition can feel like✨ Why community and connection matter so much for patients✨ The work of the Facial Pain Association and the support it offers✨ The importance of the Facial Pain Registry in advancing research✨ Resources available for patients, families, and caregiversFor many people living with trigeminal neuralgia or neuropathic facial pain, the journey can feel isolating. Anne’s story is a reminder that there is strength in community and that organizations like the Facial Pain Association are working tirelessly to ensure no one has to face this diagnosis alone.If you or someone you love is living with facial pain, this episode will help you discover resources, connection, and hope.🔗 CONNECT WITH THE FACIAL PAIN ASSOCIATION🌐 Website:https://www.facepain.org🧠 Facial Pain Registry:https://www.facepain.org/facialpainregistry📖 My book:But You Look Just Fine: My Journey to Rediscover Joy Amidst Chronic Pain and Invisible Illnesshttps://www.micheleroys.com/book🎧 Subscribe to The Michele Roys Show for conversations on resilience, healing, and finding joy even in the hardest seasons.#TrigeminalNeuralgia#FacialPainAssociation#TNCommunity#NeuropathicPain#RareDiseaseAwareness#InvisibleIllness#ChronicPainSupport#TheMicheleRoysShow