Peer Supporters

  • Cathy

    My name is: Cathy I enjoy: Running, cycling, kayaking and being outdoors doing adventurous things. And reading. I got involved with CLAPA as a peer contact because: There was nothing non-medical there for me as I’ve gone through life and it’s really interesting to meet other adults with clefts – we are all different but have some common experiences. My cleft journey so far: I was born in 1967 with a Pierre Robins syndrome cleft palate. I grew up in Ireland with lots of sisters and brothers. I had operations as a baby, at 8 and 9 years old, then again at 15 and 16. I had 2 more operations on my nose when I was in my 20s. I was the only person that I knew with a cleft, and I hated my speech, which was quite difficult for others to understand until after my operation at 16 – then fewer people would ask my sister “What did she say?” My speech will never be perfect, but as I now talk for a living, it’s clearly good enough. I would love to support you because: When I was younger you didn’t talk to other people with clefts; you talked to the Doctor, the Speech Therapist, the ‘Professional’. I want for people with clefts to feel okay talking to others with cleft, as well as the professionals. Shortly after qualifying as a teacher and having had a challenging day in the classroom with a bunch of teenagers teasing me about my speech, I realised that I still hadn’t got over my shame, frustration, annoyance, angst – whatever you want to call it – about my cleft speech and my social interactions. If I reverted to acting like a child when I was teased, how was going to control a class? I worked it out in the end, but maybe I could have worked it out a bit quicker if I’d been able to talk to someone who knows what it is like to have cleft affected speech. You can talk to me.

    cleft palate Pierre Robin Sequence Speech Issues

  • Claire

    Hi, my name is Claire and I was born with a bilateral cleft lip and alveolar cleft palate in Belfast in 1991. I have had three surgeries - two in infancy and an alveolar bone graft at age 9. Following an unsuccessful closure attempt at this time, my palate remains happily unrepaired and I opted out of further surgery on my lip as a teenager. Along the way I have had a lot of orthodontic and speech therapy input with great results. I attended CLAPA events as a child and in the past year have really enjoyed reconnecting with them as a volunteer. I am currently a trainee Speech and Language Therapist based in Edinburgh and I love it. Outside of this, I enjoy singing, painting, and playing musical instruments badly but with enthusiasm. I would love to hear from anyone who is seeking support as I have gone a slightly unconventional route by opting out of further surgeries, and I would love to support others to not let their cleft hold them back from anything, and to accept and love their face!

    Cleft Lip and Palate Speech Issues

  • Be

    My name is Be. I was born with a unilateral cleft lip and palate which was repaired at the Royal Free Hospital in London. I have three children, my youngest was born with a bilateral cleft lip and palate which was repaired at Great Ormond Street Hospital. I have been a member of the CLAPA GOSH committee for the last two years. Approximately two/ three years ago I underwent further surgery at the Broomfield Hospital. I am interested in encouraging adults with a cleft to get the advice and support they may need to ensure they have a positive, long term outcome in terms of living with a cleft.

    Cleft Lip and Palate

  • Lewis

    My name is Lewis I was born with a bilateral Cleft Lip and Palate and I have just finished all of my treatment which included 18 operations that was all completed at Addenbrooks Hospital in Cambridge, I work as a chef and in the spare time I have I do a lot of fundraising And organising events for Clapa raising not only awareness but vital funds, some of the ways I have raised money include fun days, marathons, charity meals and a skydive! I am now keen to help others as a Peer supporter by sharing my story and experiences of my cleft journey.

    Cleft Lip and Palate

  • Eleanor

    Hello! I’m Eleanor I’m 22 and I was born with a bilateral cleft lip and palate. Although I have grown up in London most of my surgeries took place in Queen Victoria Hospital situated in East Grinstead. Completing my last surgery to close my palatal fistula in the Summer of 2014 I have chosen to have no further treatments. I have had an immense amount of support from family and friends and realise how important it is to have someone to air any concerns or anxieties with. This is partially the reason I became a CLAPA peer supporter, as I know all too well that speaking about a problem or sharing a concern is pivotal to working through it. I enjoy the arts from life drawing to screen printing and thoroughly enjoy a good book. I would love to support you because having a cleft lip and or/palate is unique experience and having gone through it I realise how it can impact on many different aspects of life. I am a warm and friendly person and hope to help wherever I can.

    Cleft Lip and Palate

  • Lyndsey

    Hey, I’m Lyndsey and was born in 1989 with an unilateral cleft lip and palate. Treatment started at Great Ormond Street, moving to Poole Hospital in 1994. By age 20 I had undergone over 15 operations; a mix of repair work to both the cleft and palate, operations to improve the appearance of my upper lip and nose, jaw revision, and several sets of grommets and/or tea tubes thrown in for good measure. Alongside this, I also received five years’ worth of maxillofacial treatment. I believe being born with a Cleft bought out an incredibly fiery determination. I wanted to prove that having a Cleft would never hold me back from achieving, exploring and enjoying every opportunity life gave me. I started my working life as a PA in London however something more adventurous was calling. I joined the RAF five years ago and have since enjoyed the military life with plenty of Adventure Training, Shooting, Skiing, travelling and a great social scene. Since joining I have become a keen Powerlifter, representing the RAF and competing at national and international level. Aside from the military, I enjoy cycling, dancing and volunteering with CLAPA, the Air Cadet Organisation and for my local council’s Youth Service/Duke of Edinburgh’s Award. I live with my boyfriend, enjoying life by the seaside. Always happy to chat, encourage, support and be a listening ear to adults and young people :)

    Cleft Lip and Palate Jaw Surgery returning to treatment

  • Jon Clarke

    Hello, my name is Jon. I was born in 1975 with a bilateral cleft lip and palate. I had a series of operations and orthodontic treatments through childhood, with a final operation in 1995 to close the hole in my palate. I decided not to proceed with any further surgery once my palate was repaired. I grew up in the London area, however I have been based in Scotland since 1998 and I currently live in Edinburgh where I work as a Producer for arts projects and events. I chaired CLAPA’s Adult Voices Council between 2010 and 2013, and in 2014 I became a Peer Contact. I am always happy to hear from other adults with clefts who would like to ask questions or share their experiences, particularly those who also live in Scotland.

    Cleft Lip and Palate

  • Saff Bham

    Hey all, I am Saff, I am an adult born with a Unilateral Cleft Lip and Palate. I was born in 1980, before the restructure of Cleft services within the NHS, I had all my treatment undertaken at Pinderfields Hospital in West Yorkshire. From childhood I have had numerous operations, the earliest I recall is at 13, which was the repair of my Palate, followed by around 4 years of braces whilst I was at uni, which was preparation leading up-to a Bi-maxillary Osteotomy (Re-alignment of the top and bottom jaw) in 2002. In 2007, for no apparent reason my Soft palate came undone, which brought me into treatment under the new Specialist cleft centres. I naturally chose Manchester, the most local to me. Under there expert care, I have have had 4 more years of Orthodontic and other treatments treatment at 4 different hospitals around the North West, including braces, in preparation for a RED Frame osteotomy of the Maxilla (Using a fixed frame to bring the upper jaw forward). I have also undertaken 2 more operations to repair the fistula. I hope to hear from adults from all backgrounds and share experiences and knowledge of the Saff Saga. Being from an ethnic minority I feel i will have faced different experiences and pressures in almost all aspects of my life.

    Cleft Lip and Palate returning to treatment

  • Charis Long

    Hi my name is Charis I was born in 1987 with Pierre Robin Sequence and a cleft of the soft palate. I also had glue ear and was deaf until my second set of grommets were put in and have had a double squint repair. I am currently under the Oxford cleft team getting orthodontic treatment in Swindon leading to jaw surgery in Oxford. I am also under the Oxford genetics team to see if there is a link between my eye problems and my Cleft as well as to see why I have PRS as I am the only one in my family with it. I live in Marlborough a small town in Wiltshire, where I was also brought up with my 3 sisters. I trained to be a Norland Nanny and am currently working for a number of different families. I am interested in Egyptology and Classical History. I love being outside and going on walks and socialising with friends and family. I became a volunteer for CLAPA in 2013 and have helped at children’s residential weekends and have now become a peer contact. I am happy to hear from anyone in my area or anyone with PRS. I live in Wiltshire

    cleft palate Pierre Robin Sequence

  • Andrew Dixson-Smith

    I was born with a cleft lip and palate in 1951, which was successfully repaired at Great Ormond Street Hospital, at a time when to my knowledge, there were no cleft teams as such. I have had a long career in sales and marketing and have run my own business for the past 15 years as a care fees planning specialist, providing advice to the elderly moving into care. I have a high profile for this work and present seminars most weeks, regularly report to the National press with case study articles and make radio broadcasts. I would like to help younger adults and encourage them as much as I am able, as well as assisting CLAPA generally in awareness. I live in Surrey and my hobbies include motorcycling.

    Cleft Lip and Palate