scared...scleroderma...steroids...inflammation found behind eye. can anyone relate?

3 posts in this topic



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



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Hi Hayley,


First of all you look like you are a person of remarkable spirit from your profile picture!!


You have already been through a lot at a very young age both physically and emotionally. Now you have something new thrown into the picture that creates uncertainty for your future and is frightening. There is probably no one who has gone through exactly what you have because scleroderma offers a different menu for each of us, but we have all been through the fear of what will happen to us between the disease and the medications.


Doctors should tell you all sides of a treatment so remember the things he told you that "could" happen may not happen. Hopefully you will find the treatment helps your vision and all of your worry has been for nothing. I can't tell you not to worry because I over-worry everything.


Please let us know how you are dong and the results of the treatment. And keep those thumbs up!



ISN Artist

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