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From: Emma
Date: 03 Nov 2000
Time: 08:39:36
Remote Name: 195.195.20.252
when i was 3 they found out i had CDH because i was walking funny. I spent ages in hospital when i was a child and had 4 operations which have left me with very large scars(the surgeon i had doesnt have a very good reputation anymore!)I have a little bit of a limp now but i try to cover it up. when i was at school i couldnt do gymnastics or most sports because of the lack of movement in my legs. As ive got older i dont have to do as many sports and less people know about it.My hips are at the back of my body and i have no sockets which makes me look quite deformed as my backside sticks out considerably. kids at school used to tease me about it all the time and i lost all self confidence. but know im at college no one notices because i wear tops that cover it up quite well. I feel really left out of stuff tho because i cant wear clothes like the rest of my friends and am very self concious. I just want to look normal like other people and this makes me quite sad. the surgeon i had when i was younger told my parents that i could have an operation when im 18 to correct it so ive looked forward to this for the past few years. but a few weeks ago i saw a specialist who said that he didnt want me to have it. he said that the only good thing to come out of it would be that i would have less pain which is untrue cos i can think of a million good things to come out of it for me. When he told me i was in shock i still want to get a second opinion because i want it done. i dont see how i can live a normal life without it and can see myself being alone for the rest of my life. i had plans to defer going to university while i had the operation and now i dont know what to do for that. i want to go but not when im like this. The specialist missed out on one of the most important factors for me which is to get married and have kids. he said i could have kids but failed to notice that i have so much restricted movement in my legs that i cant have sex. this scares me cos i want kids and sex like any normal person but i fear that it will not be possible.in fact i know that staying as i am now would make that imposible. im only 17 and have my whole life ahead of me but i cant see any point in it if i cant do these 2 things which i really do want to do in the future. I have had boyfriends but only for short times because i panic when anyone wants to get intimate. Im sure no one will want me if i look like i do know and cant do whats quite natural in a relationship. These are my biggest fears and the specialist didnt want to know any of these things(it was a man and he didnt understand. i also felt quite embarassed to talk to him) He treat me like i was any other case of CDH rather than an individual with different problems. Surely in my case the operation is needed? I can talk to my mum about this stuff but not my friends which makes me feel quite alone. i just wanted to tell my story to others who may understand what im going through. If you have any comments or opnions please e- mail me at e_williams@postmaster.co.uk thanx for reading bye emma