Crosslass Posted March 26, 2014 Share Posted March 26, 2014 :confused:Hi i was just wondering if anybody in the uk has PIC punctate inner choroidopathy it effects the eyes its just iv had it for 3 years and have not met anybody else that has this condition even doctors dont seem to know much about it and have failed to treat me or make any improvement to my eyesite and im worried that there not going to be able to do anything for me it just seems as though they havnt got a clue what to do so im wondering if anyone else has had the same problem as im having so please speak up and let me know if this has effected you or anyone you know i know its a rare condition but im sure sombody else must have this in the uk Link to comment Share on other sites More sharing options...
Bludragonfly Posted March 26, 2014 Share Posted March 26, 2014 I'd not heard of your condition so googled it and came up with a range of websites to look at eg http://www.pic-world.net/ - from this one it seems that there are new treatments being researched. I can't offer direct help / information but i'd suggest that you look at the NHS Choices information as under these arrangements you could get referred to one of the London Hospitals eg Moorfields Eye Hospital. I know it would be a trip to London but you might get to see an expert in the condition. You can find info about your rights under NHS Choices at http://www.nhs.uk/choiceintheNHS/Yourchoices/allaboutchoice/Pages/Allaboutchoice.aspx Link to comment Share on other sites More sharing options...
andrea68 Posted March 26, 2014 Share Posted March 26, 2014 In a word yes. I was diagnosed in my early 20s & I'm now mid 40s. My symptoms come and go but was initially told that it affects young women on the pill. It seems to have been less severe as I have got older but at its worst I can only describe it as trying to see through windows that are covered in grease or paint. This will last for about 4 weeks & then resolves itself. Luckily I've only ever had it in one eye at a time. I've never been told a cure is available but at its worst I was given steroid injections into my eyes which was horrendous but as I said the episodes are less frequent now anyway. Link to comment Share on other sites More sharing options...
Crosslass Posted March 26, 2014 Author Share Posted March 26, 2014 i have googled it many times and have seen all the same stuff you will have seen i was just wondering if anyone else has it as i havnt untill now found anybody else with the same condition it is a horrid thing to live with my sight has got alot worse over the three years iv had it due to bad bleeds iv had and the scars they have left behind the only treatment they have offerd me in 3 years is a course of eye drops whitch have not worked at all when i have asked for any other treatment they have said there isnt any as yet so i mentioned the treatments that iv seen online and they just passed it off iv got another appointment coming up and im not going to let them fob me off again thats why i wanted to know what treatment others have been offerd if any thankyou very much for your comments and replys to my add its not so scary when you find others that are going through the same as you xx Link to comment Share on other sites More sharing options...
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