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  • Cleft Palate

    Cleft Palate

    About one in 700 babies born in the UK have a cleft palate (also called a ‘hairlip’), a cleft lip, or both. Read more →

    How come surgeons and GP's continually ignore my plea's for help when asking them for an operation on my PS even when i tell them I have had a 5 month long infection brought on by the PS. I've had 6 operations in 4 years, i first went to see about it when i was 27, 9 years after i first felt the lump. The infections started soon after my first incision and drainage healed. Since then it has been non stop infections and operations, symptoms of infections are constant dizzy spells, high temp, sleeping a lot, jelly legs. I am feeling somewhat lost at the moment because I cant find a surgeon that will take me seriously. My PS has not been showing the usual redness associated with the problem which makes it harder to argue with surgeons. The redness stopped appearing after I had the cleft closure 2 years ago.My bloods are coming back normal too. When the cleft closer was done the hair was tracking 6 inch's through my buttock which lead to an abscess the size of a golf ball. When the sinus came back after the cleft closer it was 9 months before i found someone who would do the operation. I lasted 6 months before the sinus appeared again and the whole process is starting all over again. So according to the people I have seen so far they say its not serious enough to do anything yet, even though its only weeks away from bursting through a scar on top of a scar. The whole cleft closer is feeling very swollen and numb, it's aching all day too. The reason I think I am getting these infections is because all in all its been 13 years for me up to this point living with this continual problem.Its the infections I fear the most, I'd rather have the pain from operations than to be left living like this! CAN ANYONE PLEASE HELP WITH THIS MATTER BEFORE I KNOCK THE NEXT PERSON OUT THAT TRIES TO TELL ME ITS NOT SERIOUS???? P.s. At my wits end!!!!!





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    If you’re worried why not contact the show and have a proper consultation with one of our Dr’s? You can apply via the link on our home page.

    My wife is in the same position. They have advised a procedure known as the Limburg flap, but again it's not 100% to cure it. She is also at her wits end, I personally think it is something that she will have to put up with for the rest of her life, I wish you luck for the future

    I am 28 years old from the uk Is there any groups where i can meet there people like me i got a cleft plalete because i have no one else to talk about it





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    I was born with cleft lip and palate. I am 20 years old and had my jaw operation 2 weeks ago for under-bite and now I can't talk properly. When I talk Air is coming out through my nose so when I speak people can't understand what I am saying. I never had speech problem before the operation, I don't Know what to do, also when I drink something the liquid is coming through my nose.Someone please help me, I am 1st year medical student and I dont want my education being disturbed by this speech problem.





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    My daughter had the jaw surgery with no effects to her spoech but beforehand we were told there's a risk of speech changing but the surgeon said it happened to one patient in 20 years of him performing the procedure. Kavitha you need to contact the surgeon asap!!!

    Hi, I'm a 25 year old female. I'm in general good health apart from my PS! I had my PS in 2009. It was initially treated with antibiotics, but then it burst, so I was admitted to hospital. I was admitted on the Tuesday, and was not operated on until the Friday so the PS just continued to fill up with puss!! When I eventually had it drained and debrided, I was left with a LARGE cavity starting at the top of my cleft and then deviating off upwards, downwards, and to the left!! It was packed daily for six and a half months with dry ribbon gauze, and despite strong, regular pain relief the daily packs were the most painful experience I've ever had. During the six and a half months I was on and off antibiotics for re-occurring infections, which naturally led to several bouts of thrush! I still experience pain in the area frequently when sitting for any longer than 30 mins, or if I wear tight clothing. I also experience regular infections! All in all, my PS is a real pleasure to live with. However, I do not fancy being admitted to hospital again and going through another six months plus of pure hell. I find it very hard to live with as it really gets me down. I also find it quite frightening in case I do end up needing more surgery (as has been previously suggested by my G.P.) Does any one else have any re-occurring problems like this? And any advice on how they deal with it? THANK YOU!!





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    Hi Lucy, I have suffered from this for 3 years now, and I have just had my 4th operation, but this one was different, usually it is removed, packed and left to heal from the inside out, but if you see your gp, ask if they can arrange an appointment with a surgeon in the colorectal unit in addenbrookes hospital, it has worked wonders for me so far, and they are the best surgeons I have had, they talk you through it, stay in contact after to make sure you are ok, it's a shame I didn't see them first.

    ive had this condition for 5yrs an had 9 operations including draining an more servere. ive now had a seton cutting stich put in an was absolute horrendous pain at first it seems ok now although i have to go an get it tightened in 3 weeks. im hoping this will be the the end of my nightmare

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    I don't know if anyone will be able to help me or give me any advice on what I'm about to tell you , I am a Triple X female at the age of 27yrs and my doctors told my parents when I was a baby I would never walk sit or talk I proved them wrong my mum sent me to mainstream schools and I struggled from time to time but made it through .I have many symptoms which include OCD (checking) , Asthma, Chronic Depression and anxiety \ emotional issues , Stomach Problems, i have a smaller mouth than usual and i had 19 teeth took out all at once as my mouth wasn't big enough for my big teeth to come through i have Flat foot and also some Social Phobias. I had a operation at age 9 as i had a cleft pallet .I started puberty and my body started to change at around 12 yrs old where i put some weight on and at 14 had only 1 menstrual cycle since they my body has never really developed like any other what we call normal female .My bone structure is 3 years behind so my bones are 24 rather that 27 I have to take the pill daily as I do not produce oestrogen there for I have ovarian failure and I am unable to conceive naturally due to early menopause syndrome and i am also prone to osteoporosis . My main reason in contacting you is because of my weight i am obese and due to my ovarian failure and going through the menopause and my metabolism is very low therfor i find it very difficult in losing my weight i feel like my doctors basically don't care and i don't seem to receive enough support to help me it is like they don't understand . My BMI is at 41 and i need to lose weight not just for my self but also to get the one thing i can not do and that is to conceive naturally its so hard to find out that you will never have your own children but where there is help on the NHS you have to obied by there rules and be at a certain weight/BMI of 30 if and when i do reach my goal weight i will receive 3 free goes at IVF . i have found it very difficult over the years to lose weight and i don't know which way to turn for help next all i want is to conceive . i am hoping someone can help me in any way / advice . Also i have never come across any other female or male with an triple x syndrome / xxx chromosome until i met my partner David through my friend he is 31 and he also is a extra x hes syndrome is called Klinefelter syndrome which make things even more complicated for us both to conceive as he is unable to conceive naturally also . you can read about our syndromes by searching for them on any search engine Thank you for your time im sorry about the long essay Amanda Jane x





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    I like this article but something just bugs me. Quoting the article, " About one in 700 babies born in the UK have a cleft palate (also called a ‘hairlip’), a cleft lip, or both." Please do not use "hairlip" (which is a misspelling of harelip) as another word for cleft lip/cleft palate. It is considered a derogatory term because it is referencing that the cleft palate/cleft lip resembles a hare's (rabbit's) mouth. As a cleft palate, most of this article rings true for me. Many cases of cleft lip and palate are different. Some kids have lots of hearing issues, I was fortunate enough not to have anything serious, some have a bilateral cleft palate/lip which appear on two sides of the mouth, I have a unilateral cleft palate (one side of mouth). Some times the surgery scars are hardly noticeable, some children don't have much of a speech problem, others do. There's a large variety of things that can differentiate them from other clefts. I also had some bullying in school, mostly the first year of middle school. Elementary wasn't bad, but when people asked me about my surgery scar I would get really nervous and I became really shy. Rest of middle school was pretty much a breeze because I finally got some confidence and friends who didn't care about my scar and accepted me for who I really am inside. They don't know I'm a cleft palate and perhaps I'll tell them soon. One last thing that bothers me is that I've never really met another cleft close up before and gotten to know them. I've seen a mother before holding a tiny baby with a cleft lip, and I saw this older boy once at my orthodontist who I overheard had a cleft palate from his mother. That's it. I really wish I could have the chance to meet somebody else so I won't feel so alone. Well, I am going to this big school next year with about 2,000 kids so I'm bound to meet at least 1-2 clefties there! Be proud of your cleft and who you are, it doesn't change you and if it does, if anything it makes you stronger.





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    you should not be one to decide someone's quality of life based on this disability.. i have just turned 18 and i was born with a unilateral cleft lip and life was tough but i have friends and family who love me. i hated my life for some time but i have grown to love myself and my cleft lip because it made me strong. i succeed in highschool and i got accepted to my dream college and i am a singer. i love my life, even with my cleft.

    Hi am 29 years old born with cleft lip and palate all my life I wanted to be normal unfortunately that didn't happen up to now.. Am always sad because of my face:( I have fear every time I go out what if people don't understand me(speech problem)) It really hurts being cleft.





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    I "highly" recommend that you see a maxillofacial prosthdontist. He (or she) can fabricate for you what they call an oral obturator. This is actually a dental appliance that will close your cleft palate without surgery. I had my original obturator for 39-years! It was originally fabricated in 1968 and it changed my formative years dramatically. This device will provide absolute wonders for you. PLEASE follow-thru with my Suggestion.

    Hi, just want to comment on the professional detail above of cleft lip and palate. Scans at 18-20 weeks "DO" actually pick up on cleft lip (as did with my unborn baby) and the palate can be seen via a 3D scan ONLY.





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    My son was born with cleft lip & cleft palate. Has had 2 repairs for both. In 2012. He is 2 1/2, i has trouble with speech but im not surewhy he acts like a baby sometimes. Im not sure of a normal chilf cuz my 3 1/2 yr old was a 2lb premiee and 7 weeks early. So im not sure if what hes doing is normal? I need help.





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    I hoe there would be a program that help for the surgery of cleft palate coz I'm a cleft palate too.. Here in Philippines we don't have ortho to help us regarding this problem...





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    Just to say I'm inspired by Matilda in the programme and all the positive posts here. I'm a Mum of an 18 month old with soft palate cleft, and Van Der Woulde Syndrome. I only noticed last week he has an underbite...I was a little taken a back by the surgery...I fear our road ahead is rockier than I'd anticipated...I tuned in to see how Matilda was getting on as an adult with a cleft. I'm so aware that there is often so much more going on for people with a CL&P than many people know. Well done for raising the profile of this complicated disorder. We have been really well supported by our local specialist cleft team. I would advise anyone wanting to investigate further support to find their local team....Ours is Nottingham based, and the CLAPA website is brilliant.





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    I also have an under-bite. I am 29 years old. This runs in my genetic line. My fathers cousins have it and my older sister had it until about 2 years ago when she had surgery done. My sister inspired me to go ahead and go and see someone about it. She has so much confidence since the op. I have always been self-conscious about it but always let friends talk me out of it saying i wouldn't be me without it! I was always bullied about it and have very low self-esteem.I do have a slight lisp but nothing major. I am currently in talks with the oral maxillo facial unit and have had photos and moulds done. I am due back in December to see if they will do the op.

    Hi, I have an underbite where my lower jaw is about 3mm longer then my top jaw. I feel really embarrassed about it. A lot of my friends and family sometimes say that I mumble, because I can't pronounce certain words properly. I also don't smile in my photos, because it don't look right. Due to this, I have been sufffering from depression, and have been to counselling. I have come to the end of my tether. I'm 34, and have not been working for 2 years now, due to my depression. I know the operation costs thousands. I can't attract women because of it. I don't know what to do, and am in despair.

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    I have over time told my daughter there is nothing wrong with her face (born with cleft lip) and it's certainly nothing to be embarrassed about. There are other children,teens and adults out there who feel uncomfortable about their face - with charities set up to help including building self esteem. I was so upset to see this girls cleft being described (name of the programme) as an embarrassing illness.





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    You should try to find your nearest cleft unit (CLAPA web site) and self refer. They will arrange an appointment with the joint surgical team and discuss options. It shouldn't matter about your age. I work for a regional cleft unit and we frequently see people like yourself. Good luck

    hi everyone I am thirty one years old and I was born with a cleft lip and palate and I just wanted to show my upmost admiration for matilda going on the show and raising awarness. Like her i have been asked if I'd had an accident or if i'd had acid thrown in my face. Bravo for showing just how beautiful cleft lip and palate can look





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    Depending on the severity, most (if not all) people born with cleft palate will need speech therapy at some point in their lives. For more on this... http://www.home-speech-home.com/cleft-palate.html





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    hi im a 13 year old and i think having a cleft lip and palate isnt that sad espacially when you hav friends iv had ops and bone graft i didnt let it rain on me no i get bullied sometimes and usally get those stares but i always face them some times i get really pised and i just wanna kill the guy/ girl who insults but im afraid to get in trouble just ignore the fact tht ur cleft andLIVE LIFE DERS NO NEED TO BE SAD FIND SOMEONE WHO LOVS U FROM THE INSIDE NOT UR FACE





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    I'm 22 years old. I was born with a cleft palette and cleft lip. As many of you I've been bullied my entire life. My family moved a lot for other reasons and that ment I had to switch schools and be torchured all over again by a different crowd of kids. Right now I am suffering from major depression and anxiety. I am on three different medications and they do not seem to be working at all. I'm not trying to have a pity party for myself but I understand what you all are going through. And I really wish I had the answers to help myself and other people with this birth defect. But all we can say is screw the people that made fun of us and be the best we can be.





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    Hi my names summer im 17, i have cleft lip and palate iv'e had so many ops i had the bone graft done twice due to the first one failing, i was bullied really bad when at school witch made not go now i have no gcse's, im not very confident, when i started primary school the first thing other children noticed about me was my nose ever since then iv'e hated my nose and from the age of 5 all i wanted was the nose op (witch i have'nt had yet) then a couple of months ago i got bit by a dog on the nose witch has left a scar, my teeth still have'nt be sorted witch is another part of me that i hate i have anxiety and suffer with panic attacks, like it feels ike its never going to end hopefully soon it will :) my advice to anyone that has cleft lip is to follow your dreams never let people put you down keep your head held high and to never give up, and please do not abort a child just because it has cleft lip, what if it never came up on a scan you would'nt give up on the tiny little bundle you hold in your arms so why give up on the tiny litte bundle you are growing inside you, my mother didnt know and didnt care the main thing was that she had me and i was alive and well, i hope to one day have children even if they are born with cleft lip and the best thing is i will understand there every need and ill be able to say i know how you feel and help and advise them through the hard times :)





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    Hi I am the mother of a child who was born with a bilateral cleft lip and palate 19 years ago , I think your comment of aborting a baby if it was born with this is ridiculous yes its been difficult at times especially when she hit teenage years but there are so many people who can help she learnt to except she is who she is and is avery confident young lady there are alot of people who have to abort for different reasons this isnt one of them shes as normal as anyone I also went on to have 2 other children who werent born with this condition and if they had been they would of had a big sister to help them through it.

    I am a 15 year old patient of a cleft lip and palate. I have already done my bone graft two years ago, and now my orthodontist is suggesting that I should have a jaw surgery on my upper jaw. Soon, I will be seeing my cleft lip and palate specialist... I'm wondering that after a jaw surgery... What's going to change? Sorry, I know this is kind of a stupid question since obviously my jaw will change. But... How about my voice? Will it change my face a lot?





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    I am 14 and born with a cleft lip and palate but over the summer I attended camp, they also allow kids with other serious illnesses and I learned that it's okay to be different and we have to deal with it and we are really beautiful and a gift from God he loves us as much as he loves the next person and we should live life to the fullest also the silver lining is it to joke about your condition do not let people laugh at you laugh with them explain to them about your cleft and who knows maybe you will make a new friend ALWAYS REMEMBER WE ARE ALL BEAUTIFUL!!!! We are brave





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    hey, my names katie and i have a cleft lip and palate, i have already had the bone graft but not the opperation on the jaw, so i have to have the opperation on the jaw done and the bone graft done again, its really hard looking at someone else knowing there going through what your going through, i just really hope the opperations are worth it and it will hopefully make me look better than i look now. Iv had loads of people call me nasty names though mostly boys, it does get to me, but then i think its not my fault i have a cleft lip and palate.





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    You should contact your nearest cleft lip and palate unit (ask CLAPA) and self refer yourself to the orthodontist for an opinion. It is part of the service that we treat adults as well as children. I believe that it would be free in England and Wales. Your own dentist can refer you if you would prefer. I work in a regional cleft unit and treat frequently treat adults in your position. Good Luck

    Hi Carol, my daughter was born with a severe cleft palate (luckily no hairlip) but couldnt speak until her first operation at 3.5 years old. We could only use sign language until then. Shes had 3 major operations for her palate, mainly to improve her speech. She has lots of other problems that are linked, like Stickler Syndrome - (cataracts in both eyes). Its so hard for them - people are so quick to judge. Im now a fundraiser for a cleft lip and palate charity. Good luck for the future and stay strong xx





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    Hi Carol, my daughter was born with a severe cleft palate (luckily no hairlip) but couldnt speak until her first operation at 3.5 years old. We could only use sign language until then. Shes had 3 major operations for her palate, mainly to improve her speech. She has lots of other problems that are linked, like Stickler Syndrome - (cataracts in both eyes). Its so hard for them - people are so quick to judge. Im now a fundraiser for a cleft lip and palate charity. Good luck for the future and stay strong xx





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