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Joanne from the UK

Joanne’s Story

HI, my name is Joanne and I live in the UK. Me and my sister both have Stargardts although my sister is now registered particialy sighted. I myself still have pretty good eyesight, I do wear dark glases because my eyes aren’t what they used to be but overall consider myself very lucky, for the time being that is.

Our problem is that we both suffer a lot of pain in and around the eyes more so in the back of the eyes which is made worse by lights either natural or artificial and looking at things for any length of time. My sister, because she can’t see very well anyway, has found that the pain eases off after breakfast although it is still in the background but she can deal with it. Myself, on the otherhand, can’t seem to shake the pain off. I have tried a number of pain relief ideas which didn’t include prescription drugs, all to no relief which has left me no alternative but to go on very strong pain killers. We have both explained to the consultant the effects of the Stargardts but have been told that there are no registered Stargardts patients that have any of these symtons and that it must be something else causing this pain. We have both had a number of tests including brain scans but nothing has been found, is it just coincidence that we both have Stargardts and both suffer this pain or do we have a different condition and have been diagnosed wrongly? Anyway, my question is to anyone out there that reads this, do you or anybody you know that has Stargardts suffer from any kind of pain???????