We Need To Be Seen and Heard: Advocating for Older Adult Patients with Cleft

Speaker Luci Capo Rome is a retired advanced practice registered nurse/nurse practitioner, poet, author, fitness promoter, yogi and advocate, born with a severe and complete bilateral cleft lip and palate. Her mission is advocacy for mature adults affected by craniofacial/facial difference who may feel isolated and ignored due to their appearance and or speech, not meeting other cleft affected adults; feeling like they are not receiving updated information regarding dental care and support from the medical community. This may lead to depression and anxiety.

Luci's goal is to change this issue so that cleft affected mature adults receive the support, healthcare and social connection in a way that works for them. She has begun the process locally in her county of residence by speaking to the Commission on Aging and publishing in a local magazine for the older adult. Her enduring process is pursuing state and national organizations regarding her concerns. Creating an advocacy network for the older cleft community worldwide that works for everyone is the goal. More qualitative studies need to be generated. These are questions she thinks about: Are you an older adult with craniofacial/facial difference? Are you feeling alone and isolated, wanting more support and interaction? What would assist you to feel better about yourself and feel connected with others?