Your Stories

Submit Your Story

A good case study isn’t just about describing what happened, it’s about taking the reader on a journey with you, helping them to understand how you felt at each moment and recognising the similarities in your shared experiences.

Think about why you want to share your story – maybe you want to raise awareness; share any lessons learnt; or reassure people in a similar position that they’re not alone. Whatever your reason, try to make your message come across strongly in your story.

Need Help?

Not sure where to start in telling your story? The following questions are prompts to think about what to include in your story. You don’t need to answer all of them if you don’t want to – what’s important is your story includes what matters to you.

Questions for Adults

• When and how did you first become aware of your cleft? Was it something your family talked about? How was your cleft treated in your family?
• How did having a cleft affect you growing up? How did you cope with any surgeries or treatments you had?
• Were there any unexpected problems with having a cleft? What would have helped you overcome any problems?
• Have you had any treatment as an adult? What made you decide to have treatment?
• Do people ask you about cleft? How do you react? Do you ever bring it up in conversations?
• How did you find CLAPA? When did you join the CLAPA Community and why? How has being part of the CLAPA community affected you?
• Do you think it’s important to have a community for people with, and affected, by cleft?
• What would you say to young people with a cleft who may be struggling? What is the one piece of advice you would give them?

Share Your Story

Questions for Parents/Carers

• What was your experience of diagnosis? How much did you know about cleft before your diagnosis?
• How did the diagnosis make you feel about your pregnancy/ baby?
• When did you tell your family and friends? How did they react?
• What were your experiences with surgery and treatment?
• Were there any challenges you didn’t expect or you weren’t prepared for?
• Do you talk to your child about their cleft? How do they respond? How do you think they feel about their cleft?
• What is one piece of advice you wish you’d received when your child was diagnosed, or one thing you wish you’d known?
• When did you join the CLAPA Community? How has this helped? What do you get from CLAPA that you can’t access from the NHS Cleft Team?
• Do you think it’s important for parents to have support from an organisation like CLAPA?

Share Your Story

Parents

Reading stories from other people is one of the best ways to know that whatever you’re going through, you’re not alone.

CLAPA has collected together dozens of stories from parents of children with a cleft which cover everything from diagnosis to coping with surgery and watching their children grow up.

Read Stories from Parents

Young People with a Cleft

We currently don’t have many stories from young people with a cleft, but we’re always looking for more! You can read the ones we have using the link below, or scroll down to find out how you can submit your own.

Read Stories from Young People

Adults with a Cleft

Our stories from adults range from those not yet 20 years old to those into their 80s, and their experiences couldn’t be more varied! If you’d like to share your experiences with the rest of the CLAPA Community, please do submit your story using the form below.

Read Stories from Adults

CLAPA is committed to safeguarding the people of all ages and backgrounds who use our services. Click to find out more about how we make safeguarding a priority.