Older cleft lip kids & adults need Support

Cleft Lip Awareness Week.

This is Cleft Awareness Week and one campaign in the U.K. is using the time to highlight the fact that many people affected by cleft lip and palate don’t get much support, especially as adults. In Western countries, traditional cleft care normally ends around the age of 18 years. As a result, little is known about the longer-term outcomes of those living with cleft lip and/or palate. This is part of why I wrote Cleft Heart: Chasing Normal: to give people an idea of how the consequences of the birth defect remain after surgeries are over.

Genetic components of Cleft Lip.

To give just one illustration of long range consequences of clefts: not long after I painted the bottom right image of myself as a 30-something guy, I encountered yet another bump in the road as a cleft-affected person. This one had to do with worries about the heritability of my cleft. Because I had started thinking about having children in the near future, I was asked by others about whether there was a strong genetic component involved in my particular cleft.
Woman holding infant Karl surrounded by portraits at later ages.

Schonborn self-portraits after surgeries

The only way I could put my and others’ concerns to rest was to investigate my family lineage and have a genetic counselor advise me about the findings. 
Millions of adults around the world live with a cleft lip and/or palate, and very few studies have been done of their long term challenges and coping mechanisms. 
However, a research psychologist named Nicola Stock from the University of Bristol’s Centre for Appearance Research, recently  conducted in-depth individual interviews with 52 adults from across the UK, about their experiences of growing up with the condition.
Nicola’s research shows that “although most adults adjust well to having a cleft, many require additional information, further treatment and psychological support well into their adult years.”
Stock says, “I have been working in the area of /palate for several years now, and … until now the views and experiences of adults with the condition have been relatively neglected.

More support for cleft lip adults is necessary.

Her study is in the Cleft Palate-Craniofacial Journal.“It is vital that psychological support be available to adults with cleft, to help them cope with any ongoing difficulties, and to ensure they have realistic expectations of further treatment.” 
One of the people Stock interviewed said“I found myself totally relaxed to share my own experiences of being born with a and the journey from baby to teenager to adult… I did not share with anyone, even my own family until … at the age of 62 [I] met and spoke to another person with cleft for the first time in my life! It was very liberating and now I want to help as many people who may need the support that I never had.”
A summary of  Stock’s research findings is available from the The Cleft Collective, a collaborative program between Bristol and Manchester University.  

To learn about CLEFT HEART: Chasing Normal, click the Amazon or Barnes & Noble buttons in the margins. Or click the image of the book cover. My coming-of-age memoir has intertwining love stories, mystery, tragedy, and triumph.

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