hayleylouiselewis

Thanks Jo Really helps a lot, sorry that you are still ongoing steroids treatment but you said you feel better for it...so that is good :) . I am having the injections in my arms...over 4 days... It's not to atop pain for me though it is to try and clear the white cells and inflammation. I do not want to come across vain in anyway but I am worried about weight gain....I go to the gym 4 times a week. I wonder if there is anything to stop the steroids from making me big....hahaha I might only need them once. Let's hope so ay :)

First of all sorry if this all makes no sense, I am not good with wording haha My name is Hayley I am aged 23 and live in Bristol, UK. I have had Morphea since I was 7 years old. My mum discovered it and we started going to the hospital on a regular basis. So I have a very deep indentation on the right side of my head it is about inches (hair does cover it but have to wear hair certain way to hide the dip) I have no fat tissue or muscle in my right temple so it dips in (also have to have a heavy fringe to cover) Large area of back and collar area is also discoloured and loss of muscle and fat tissue. As you can see most of my condition is cosmetic and I have had many things done to even out the right side of my body to the left like fat collagen injections, face lift on right side, fat tissue from my legs and abdomen put into pack and front area. My condition also means that I have lost a lot of nerves in the right side of my face. My right eyebrow, nostril and part of lip is paralyzed. I have seen many doctors about this and there is not much that can be done I was bullied in little school and big school, moved schools 3 times. People used to call me dent head or jackal and Hyde because of the difference right and left side of my face. I have accepted that I look different and I try to hide it the best I can with my hair but it does affect me. A lot of people say they don't see it unless I point it out. Now I have had all my surgery I think I look pretty normal About 2 years ago I started to get blurry and double vision in my right eye. I did not think it had anything to do with the condition. Yesterday 13.07.12 I had an appointment to see what can be done about my eye...My Doctor sat me down and told me that they have found inflammation, fluid and white cells behind the effected eye upsetting for me as I never thought it would become more serious and dangerous. He has booked me in for a emergency 3 day treatment undergoing 4 steroid injections to try and get rid of the inflammation. He has scared me of many things that could go wrong and things that may happen if the steroids do not repair the eye. Having this double vision which is getting worse every day is very upsetting. I am faced with.... Not being able to work Vision is not good Not being able to drive Right eye is turning in and very visible Undergoing a lot of ongoing surgery and steroids. I am scared and worried what the future may hold. Has any one ever been through a similar situation or is going through the same thing. I have been told by my doctor that I have a very RARE case of Scleroderma as it effects my nerve system. Thanks for reading. H x R

Hello again. Thanks for replying....really nice to get support through this site and support others. I knew that no one would be able to relate to my problem as it is really rare but it is caused by the scleroderma so I will keep posting. I have tried to upload some pics of before and after my surgery but will have to wait till I go onto my PC. Would really like to find someone who has experienced anything similar in anyway....as little anxious about the steroids and side effects. I will try not to scare myself just hope all steroids fix my eye then I can continue my surgery on the cosmetic side of things :)

First of all sorry if this all makes no sense, I am not good with wording haha My name is Hayley I am aged 23 and live in Bristol, UK. I have had Morphea since I was 7 years old. My mum discovered it and we started going to the hospital on a regular basis. So I have a very deep indentation on the right side of my head it is about inches (hair does cover it but have to wear hair certain way to hide the dip) I have no fat tissue or muscle in my right temple so it dips in (also have to have a heavy fringe to cover) Large area of back and collar area is also discoloured and loss of muscle and fat tissue. As you can see most of my condition is cosmetic and I have had many things done to even out the right side of my body to the left like fat collagen injections, face lift on right side, fat tissue from my legs and abdomen put into pack and front area. My condition also means that I have lost a lot of nerves in the right side of my face. My right eyebrow, nostril and part of lip is paralyzed. I have seen many doctors about this and there is not much that can be done :( I was bullied in little school and big school, moved schools 3 times. People used to call me dent head or jackal and Hyde because of the difference right and left side of my face. I have accepted that I look different and I try to hide it the best I can with my hair but it does affect me. A lot of people say they don't see it unless I point it out. Now I have had all my surgery I think I look pretty normal :D About 2 years ago I started to get blurry and double vision in my right eye. I did not think it had anything to do with the condition. Yesterday 13.07.12 I had an appointment to see what can be done about my eye...My Doctor sat me down and told me that they have found inflammation, fluid and white cells behind the effected eye :( This is very upsetting for me as I never thought it would become more serious and dangerous. He has booked me in for a emergency 3 day treatment undergoing 4 steroid injections to try and get rid of the inflammation. He has scared me of many things that could go wrong and things that may happen if the steroids do not repair the eye. Having this double vision which is getting worse every day is very upsetting. I am faced with.... Not being able to work Vision is not good Not being able to drive Right eye is turning in and very visible Undergoing a lot of ongoing surgery and steroids. I am scared and worried what the future may hold. Has any one ever been through a similar situation or is going through the same thing. I have been told by my doctor that I have a very RARE case of Scleroderma as it effects my nerve system. Thanks for reading. H x