Building a Community for Adults with Craniofacial Difference

by Luci Capo Rome

I'm an advocate for older/mature adults with craniofacial/facial difference (including myself) who may not be receiving the care and support we need and deserve. And I’m thrilled to see that globally, craniofacial/facial affected children are receiving the care and support they need. And that more young and middle-age adults in the US who are cleft/craniofacial affected are joining together on social media to advocate for themselves in all aspects of their physical, emotional, and psychosocial needs. My concern is what happens as we all age and our needs for ongoing care remain throughout our lives.

I have a mission to help other mature adults receive support from the cleft community and beyond, along with their peers with craniofacial/facial difference. I’ve been doing research and found one conclusive article from The Cleft Palate-Craniofacial Journal published in 2015 called “Older adults’ experiences of living with cleft lip and palate: A qualitative study exploring aging and appearance.” This study was accomplished with CL/CP (cleft lip and palate) adults from age 57-82. The article centered around feelings of isolation at times and having little contact with other people with a cleft. It also mentioned  health care could be more considerate to the needs of older persons with a cleft, particularly, around dental care and providing information about it. Many participants in the study felt ignored because of their age. My thoughts are that feeling and being isolated can lead to anxiety and depression, keeping mental health issues in mind.

“My ongoing goal is to endorse all cleft affected/craniofacial individuals and be a voice for this distinctive community by putting information out there. I’m in communication with AARP (The American Association of Retired Persons) both nationally and in my home state of Kansas.”

I’ve begun talking to the commission on aging in my county of residence and have had an interview published with the Johnson county Area Agency on Aging as a way to reach out to the community.

A July 26, 2022 Statista survey shows that many mature adults, including my friends and me, use email, text, the internet, and YouTube for information and are seldom involved on social media. They mostly use TV, magazines, journals, and books. Social media could keep us connected to a global community of aging adults with cranofacial differences. Maybe grandchildren could help their grandparents get on social media. 

“But we need to think of other ways to advocate to keep us connected. We can start with more qualitative studies to learn more about the community. These are the questions I think about: Are you an older adult with craniofacial/facial differences? 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?”

The answers will help us better address this unique population’s needs. Because they deserve to live a happy life, feel heard and seen, and feel like they belong.

About the author

Luci Capo Rome is a retired registered nurse with over 47 years of service. She earned a diploma in professional nursing from Braddock General Hospital School of Nursing in Braddock, PA, a bachelor of science degree in nursing from Duquesne University, Pittsburgh, PA, a master of science in nursing, family practice nurse practitioner at the University of Pittsburgh, Pittsburgh, PA and a post-graduate certificate as a psychiatric mental health nurse practitioner from the University of California, Fresno.

She is a pioneer; recognized as the first nurse practitioner in Cass County, Missouri and the first nurse practitioner at San Joaquin Behavioral Health Services in Stockton, California.