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  • Arthrogryposis

    Arthrogryposis

    Arthrogryposis is a descriptive term to describe a congenital condition that causes curved joints in several areas of the body at birth. Read more →

    Hi, for many years I haven't been confident with my breasts and bento the doctors on many occasion asking if they are a normal shape as I believe they are not! I got the courage to go to a plastic sergeon to have a quote to go ahead with plastic surgery. However the sergeon has quoted me over £7000 for this as I have a deformity called tuberous breast deformity and will have to have 2 procedures to correct this. I have since been to the doctor stating this asking for help for funding towards this and keep getting declined! Is there any other way I can have help with this ? As I do actually have a deformity- I knew it from the start!





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    Hi.. I'm 44 and been "so called" suffering from reflux too for 3yrs now... Started with back pain, then through to the breast bone also finding it painful wen I take a deep breath. So with this went to doctors and was told take this "naproxin" not long after had to go to A&E waited 8hrs to be seen..... Then to be told "can't find no problem take these paracetamol... 3days later bck to A&E and had a camera and biopsy taken and nothing was wrong.... Then sent home. Went to my doctors nxt morning and basically told "i had to relax and ride through it...... 24hrs had past and that was it..... I couldn't take anymore, I was so tired, exhausted ov pasein around and feeling really bloated. I then went to a different hospital and low and be hold, that evening had emergency operation for a perforated ulser in my upper dernum.... The only thing they could do was to patch it up. Unfortunatly.... Had complications a week later from "foetal vomiting" for 16 hours which u could imagine was scarry and foul and had to phone for an ambulance, which the paramedics said "they had never seen someone who could vomit so much (im talking half a bucket) sometimes lime green or a browny colour. Srry for being so graphic but people need to be..... Prior to that.....1 year to the day, i had to have my gaulbladder removed caus of "stones" wether its a coincidence I don't kno. A fellow sufferer...... Who still to this day experiences symptoms and my doctors are not interested to find out the problem... Jst tablets, tablets, tablets,.... Onzoprasol. Fluxotine. Amplodopine. Plse... I need some guidance or help.... I hav no quality ov life at the moment always feeling tired and exhausted. Well..... Rant over lol...... Marck.





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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.

    I'm so distressed, I have had three children and breast fed all of them, I am 24years old and a full time mum, I had my eldest child at 18, therefore I wasn't fully developed anyway and have never seen my body as it was supposed to be. My breasts droop and are highly embarassing for me, my partner has never seen them and the thought of taking my children swimming makes me cringe because of them. I feel so depressed and low, I try to carry on about my daily buisiness but it's constantly on my mind, i've even showered with my bra on before today in a plight to not see their deformity. It effects me 24/7 and i'm angry at myself for feeling like this, for feeling like I just can't accept myself for what I am. I went to my GP and spoke about it with them; it's taken me six years to pluck up the courage to go, it was a highly traumatic experience, I was told that funding was not available for me to have implants with the NHS and that I should consider seeing a phsychologist- I'm no doctor but I know the remedy to my problem isn't a case of self acceptance anymore, I have to have the procedure of breast augmentation done to feel like a woman again- unfortunately i'm currently unemployed and seeking work and with a bad credit history to match; finance is out of the question. I'm beside myself with anxiety and feel at an all time low. I'll just have to class them as war wounds and try to move forward with my life.





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    Sorry you are so unhappy with your breasts. I am a mum of one, and due to breast feeding also have saggy breasts. However you seem to be more affected by this than me. It is hard, especially as a woman when you don't feel attractive or "normal". It is great you have breast fed all 3 of your babies, and given them the best start in life. Unfortunately having children does effect your body in many ways (not all good ones)... What I would do if I were you is go and get a second opinion at another doctors surgery. Many GP's will say you should go and see a psychologist, as I'm guessing they don't want to fork money out on the NHS to pay for it. (The NHS are rubbish)! Many cases can be physiological though. I would say in your case though it is quite clear you are extremely unhappy, and it sounds like it is effecting your day to day routines. Go and seek a second opinion. Or even go and see a physcologist. It cant do any harm. As your Physcologist can write a letter to your GP stating the severity of how you feel about your breasts, which your GP cannot ignore - especially if it is effecting you so badly. Which will enable you to get an operation done. Talking about it too may even help in certain ways...

    I am flat chested and have had the test at the hospital that there is no growth that will accrue during my life time. No clothes fit me properly and I am called shim (witch means half girl half boy) I can not escape from it because the world has developed to nothing but what women are suppose to be, curvy with big breast and nothing else matters on the inside so the world thinks. So does that mean i am not a women. I started my period when i was 11 and my mum has C size breast and my aunts are all DD or DDD so what is wrong with me i eat fine i exercise allot so why me why am I not excepted as a human or dare i say female. No doctors will help me and i very petite and very short much more then anyone in my family. I can not enjoy life without knowing what gender i am, to wake up every day and have a panic attack every time i am mistaken for a 8 year old girl or boy is not what I call fun. None of what I say is a lie I really am an outcast even to my family I need help please....Sorry for the huge complaint but one more would my heart transplant when i was young have anything to do with my deformity. i can not keep wearing padded bras that is faking it I want to be a women with real breast. I have tried very hard to forget but that is making me do the impossible be cause I am surrounded by people who remind every day because there heart is as cold as ice no joke. So sorry I wrote to much.





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    I'm 25 and have the same problem i have been told since I was 14 the government would fund me to fix them however they now don't think it's a deformity which it is I just had my first child and was not able to breast feed due to the deformity bras I still have not found one that fits nicely and I find that when I do my boobs sit so funny that they ruin the bra n stretch them out so I would suggest fighting as much as you can to get them corrected I know they have affected my life in a big way with how I view my self and my relationships

    I'm 20 and also have tubular breasts...I originally discovered the actual term recently in a magazine and after ten years it was nice to at least be able to put a name to them. They've always bothered me...but to be honest in various documentaries over the years there have been women with breasts just like mine who have been celebrated as "normal" and just having a different shape. However, I've just watched tonight's episode where a woman with tubular breasts was described as having "a congenital deformity". It was the word deformity that struck me as I consider it such a strong word. How can it be called normal in one situation and deformed in another? I was just wondering if anyone knows if it is medically classed as a deformity, as if not it was an extremely poor choice of words on the part of channel 4. And no doubt it upset many women as it did me. Unfortunately it has only been recently that I have started to feel extremely self conscious about them (to the point of visiting my GP to discuss surgery) and this has done nothing to help :( any insight would be greatly appreciated.





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    Hi Sarah, it was great to read your comment. i too have tublar breast syndrome but believe pixie used the word deformity to describe the condition as within health care deformity means 'not usual/common'. i am just 17 years but from a young age knew something wasnt quite right and have very low self esteem due to my breasts, not only this but they affect my every day life; to be able to get intimate with my boyfriend or go swimming with the girls without feeling like an uncomfortable 'freak' would mean the world to me not to mention being able to buy normal clothes/bras. It took me years to actually pluck up the courage to visit my GP about my breasts, but i am so glad i actually did! she was so lovely and more reassuring than i could have wished! unfortuantely due to her lack of experience with tublar breast syndrome she was unable to make an offical diagnosis; she has therefore referred me to a plastic surgeon within my area (this is due in three weeks time) i am both nervous and excited at the same time as i don't know what to expect. I am also more nervous as my appointment is with a male surgeon (i would ideally prefer a female but understand this may not be possible). All i can say is if your so unhappy with your breasts then do something about it; persist with your GP and if you don't get the results/referral you want then try another GP within your surgery or simply change doctors. Good Luck! :)

    I was diagnosed with tubular breast deformity and had implants and a breast lift performed about 2 years ago. I chose just a regular plastic surgeon and I couldn't be happier with my results! I wish I would've had this surgery years ago and do not regret one single penny spent on it. The embarrassment of tubular breast deformity was huge and I never realized that this was an actual condition. I just thought I had "freak breasts". I'm so happy you are getting surgery done. You will be so pleased!!

    hi - do u have any deformity of ribs? i too have just been diagnosed with ps (at age 37) i have deformed ribs and have been refered for boob job to even up bust as i am same as u cup size differs loads. i have got the go ahead and am now waiting to see plastic surgeon for second time to arrange surgery. If u have rib problem as i have then go bak and tell them about me and that i am allowed one and u should too! please let me know how u go as i know wot upset this can cause (little as it may seem to others it DOES affect mental happiness!) try a diff doc as well cos i went to my old go 15 yrs ago n begged him to break ribs to solve it but he wouldnt (thank god now lol) but when i changed gp n went on the approach of ribs instead of boobs it got me a diagnosis and result. ur prob being seen as moaning when theres no need. but if u have deformity then u have need i found. sad that u have to fight like this. my doc was sooooo good and is even trying to find a specialist to find out more about Polands. please keep me posted how u go on. x

    Hi, Im 31, and I have this deformity, for years I knew there was something just not quite right, my breasts just didnt look the same as most women, it caused me to have such low self esteem & became very depressed at times, so at 30, I decided I couldnt take anymore, went to see my GP, and had them corrected with implants, I wish I had them corrected a lot earlier! I had an amazing surgeon who was straight with me from the start, the care and after care I rec'd was great and my life has changed for the better! I know I may have complications in the future, but I will cross that bridge when I come to it, in the meantime, I am enjoying feeling and looking normal. Please dont feel as though nothing can be done, it can, dont give up, find a good surgeon who knows all about this deformity, life is far too short. Take care. xx





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    Just want to add, that Im not encouraging breast implant surgery, this is a decision that shouldnt be taken lightly and something I thought about for many years. Take care. xx

    did you have to pay for the surgery?

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    Hi, I am 25 and felt after reading the above i should respond. I too, have this deformity. I have had four operations now, due to one bad surgeon and a few good ones to correct the work. And although my last op was less than a week ago, so i cant tell you the result, i trust in my consultants. The outcome the NHS had after the third op was good enough, not the perfect breast but alot better than what they originally looked like. They have refused to stop until i am happy and i have a very supported team of doctors. Its a hard, but think, all the people around you (in the NHS) after an operation of this kind are breast cancer reconstruction patients. So although it sucks to be different, we arent going to die. We dont come out of operations not knowing if we are going to make it. Its horrible to have this deformity and i would not for one second try to say it doesnt effect you emotionally as well as physically, believe me, i know. But we will survive, find a good surgeon, get your self sorted and love life. As i have learnt from many women i have shared hospital rooms with over the last 6 years, life is too short. Take care x





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    I had a typo...exercising will not change the deformity due to PS.

    Is keyhole bunion surgery avaialable on NHS in Cornwall even if the deformity is bad but the pain isn't?





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    I'm 16 And my right breast is soo much smaller than my left, I'm so embarrassed I keep turning boys down because I'm afraid they might tell others about my deformity, it's ruining my life! What can I do?





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    i have the same problem, have gone to my doctor about it and i am waiting to hear back from the hospital to find out if i am eligable to have corrective procedures done on the nhs

    Hey its Neela,Philip thank u very much for your reply, but I don't think my country have a maxillofacial prosthdontist:( I did 4 surgeries but I still have a hole in my palate and deformity.. I even try going overseas to fix it.





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    Neela, are you in the u.k? If you are unhappy with the results of past treatments you can still get surgery on the NHS. Google CLAPA to find the surgical team for your region or look on Facebook, CLAPA adult voices group

    I have this and went to my GP last october. He referred me to a plastic surgeon on the NHS and they have accepted me. Every case is different but with tuberous breasts it is seen as a deformity so they will most likely let you have it on the NHS. I am now looking forward to surgery which should be done by September :)





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    hi, i hate my deformity.... and i will go to the GP soon, because like your son... im embarresed of taking off my shirt in any situation... can u link me to the UK specialist? 2 questions... does the surgery cost? and has it left a big scar?

    Though PE and PC can be just one of those spontanious things, it can be a sign of a connective tissue disorder (CTD). Please read the info on Marfantrust.org and ehlers-danlos.org to rule them out. You do need to have more than a pectus deformity to have a CTD, so don't panic if your only symptom is PE or PC





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    There is no one answer for will be off putting for girls. Some are put off by red haired guys, some just love red hair. As for getting rid of Fordyce spots, the information is mixed. Most doctors take the position that this is neither a disease nor a deformity. Therefore, it is not something that needs to be treated.

    Hi Sarah, it was great to read your comment. i too have tublar breast syndrome but believe pixie used the word deformity to describe the condition as within health care deformity means 'not usual/common'. i am just 17 years but from a young age knew something wasnt quite right and have very low self esteem due to my breasts, not only this but they affect my every day life; to be able to get intimate with my boyfriend or go swimming with the girls without feeling like an uncomfortable 'freak' would mean the world to me not to mention being able to buy normal clothes/bras. It took me years to actually pluck up the courage to visit my GP about my breasts, but i am so glad i actually did! she was so lovely and more reassuring than i could have wished! unfortuantely due to her lack of experience with tublar breast syndrome she was unable to make an offical diagnosis; she has therefore referred me to a plastic surgeon within my area (this is due in three weeks time) i am both nervous and excited at the same time as i don't know what to expect. I am also more nervous as my appointment is with a male surgeon (i would ideally prefer a female but understand this may not be possible). All i can say is if your so unhappy with your breasts then do something about it; persist with your GP and if you don't get the results/referral you want then try another GP within your surgery or simply change doctors. Good Luck! :)

    Hi im a 34 year old male just found out by looking on net of my condition. I have an underdevelopt right pec and deformity to right hand mosr of the time doesnt. Bother me but sometimes can get me down girlfriend and mates are fab and tell me that they dont notice does anyone know of any links for surgery with costings plz





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    I have to agree when first viewing the gallery I felt re-assured then watching this clip I thought I'm ten years younger and already larger . I throughout my adult life have denied myself and my partners certain sexual pleasures because of what I consider my deformity not quite sure what to think or feel now??

    Search the web for "Fordyce spots" and see if the photos match what you're seeing on yourself. If so, nothing to worry about. They are like freckles, totally normal (even though many people with freckles don't like having them). Most doctors will suggest that since they are not a disease or deformity, then they should not be treated.

    Im 21 now and was born with Polands syndrome. I am very conscious of my deformity and discussed a number of options when I was about 15, but was never aware of this proceedure. instead I opted for a chest tattoo that covered my unformed right side to mask it. not finished yet but im now out and about with my shirt off, something I was never capable of doing before.





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    Your views are the same as mine. I didn't realise that I had this deformity since I watched the programme, wish I had never watched it now. I don't know what to do about it. I took a good look at my boobs in the mirror yesterday, they are ugly, they look ok in a bra but out of one they aren't as nice as any other normal 24 year old should be. :(

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