THE CAA
02/07/2025
THE LACK OF INFORMATION ON ADULTS OVER 40 AND THEIR NEED FOR CLEFT CARE.
“the cleft lip and palate repair consists of a complex process that takes a long time, extending from infancy through adolescence and even young adulthood”(NIH.gov)
For those of us who are well in to adulthood and were born with a cleft lip and or palate. This blanket statement omits that our cleft condition will follow us for a lifetime, including well past our adulthood. The narrative needs to change.
The complex process that takes a long time, is more than just in to young adulthood. We deal with the breakdown of past surgeries. We deal with dental issues. Sometimes even our scars change drastically into young and older adulthood that it changes our socioeconomic factors in a major way. By our own feelings and reactions to our changing faces or those around us who observe our faces and react.
Most information I am finding online. Which is where most of the world gets its information now. Is lacking in adults past 40 focus. There needs to be a focus on the breakdown of our faces after a certain age. How after 40-50 we find ourselves back in the arena of needing orthodontic, or major dental repair. And in America insurance options for fixing the breakdown of a rhinoplasty or scar revision is considered cosmetic. Hindering some adults with clefts ability to be a functioning member of society.This needs to change.
If we don’t get surgeons, orthodontist, therapists, the list of medical interventionists is long. And we need the focus to shift in the world of cleft lip and palate repair..Not the entire cleft community, just make a bigger space for the aging population of those born with cleft lip and or palate. Give adults born with clefts options, information, the help so many of us yell out for that goes unanswered. No one in this day and age should feel defeated, but yet here we are. Years after adult groups have started still fighting to be heard.
So I ask, what can our community do better to shine a light on the adult cleft community? Without the movement losing focus on its goal, to help adults with aging cleft issues.
It is not a cute or likeable subject in the eyes of our society. Making it hard to keep or gain attention. Which then leads to the zero action taken factor.
We still don’t have dedicated adult cleft clinics. First issue being finding funding. Which leads us back to a full circle.
This has to stop. As a community there have been major leaps and bounds. The literature online is there, even though it is lacking in information for adults with cleft Lip And Palate issues after the age of 40.
So now I am asking for those of us who are adults with ongoing cleft lip and palate issues to band together, come together and find a solution to the lack of information and the lack of action in our community. And when I say come together, I don’t just mean adults with clefts. I am talking about taking on the medical community and challenging them to take on the adult Cleft Community.
To those adults out there currently dealing with ongoing adult cleft lip, and or palate needs, I want you to know that you’re not alone. Although currently our movement is just a
slight rumble. there is a movement happening. I implore
you to stick with your advocacy and always speak up.
Words in quotes taken from here:
The Global Occurrences of Cleft Lip and Palate in Pediatric Patients and Their Association with Demographic Factors: A Narrative Review
On this website: https://pmc.ncbi.nlm.nih.gov/articles/PMC10969537/
Objective: Orofacial clefts are one of the most common abnormalities that occur in the orofacial area. Due to their high prevalence, special attention provided to risk factors and their possible involvement in the occurrence of orofacial clefts is ...
