Stargardts Journey

This is my first attempt at a blog. I have recently been diagnosed as having Stargardt’s disease and thought I would write about my experiences of Stargardts. It is a form of retinal dystrophy and basically means that within a number of years I will lose my central vision. It can present from childhood, more usually as I understand it, in mid-teens. I am lucky because I have made it to my 40s without knowing about it. It is quite rare and is genetic, usually caused by recessive genes but occasionally a dominant one.

About a year and a half ago I went for an eye test, expecting to get a slightly different prescription for my reading glasses. I had not had a test for several years but my eyesight is generally good so I wasn’t worried. There are some severe allergies in the family which means that I have to read the ingredients labels on everything from foodstuffs to shower gels carefully and I had been struggling a bit with some labels. Kids’ eye tests were fine then it was my turn. The optician said that there appeared to be some changes to my retina, it was probably nothing to worry about but as a precaution I should see my doctor and get a referral to the local hospital’s opthalmology department. That was March, I duly got an appointment for July.

When I saw the opthalmologist he spent ages looking at the back of my eyes, the examination where they shine a bright light in your eye, peer through a magnifying device and ask you to look, up, down, right and left. He was so long doing this that I honestly expected him to say that he could see nothing wrong and did not know why I had been referred. Unfortunately this was not the case. He wanted to do an OCT test and to take some photographs of my retinas to send to the specialist based at St. Paul’s eye clinic in Liverpool for a second opinion. He thought it was unlikely that I would have to actually go to Liverpool.

Anyway, there followed a year of my being sent to Liverpool for some extra tests and examinations. Nobody actually said what they thought was wrong just kept taking pictures and saying they were going to discuss it with the consultant. In the meantime I seemed to be finding it hard to read for as long as I used to without my eyes getting tired but eye tests showed I had good vision. I was very worried when I went clay pigeon shooting for a work’s social event and was awful, I couldn’t hit anything except for the targets that bounced along the ground. One of the experts suggested I closed one eye but when I did so half the gun barrel and the gunsight vanished. I became really worried that I should not be driving if I had blind spots. Fortunately I was back to Liverpool just after this and able to ask the docs. I had a field vision test and it showed up some deterioration but was not too bad and when using both eyes my vision was fine, so I am able to drive. I still did not know what, if anything was wrong with my eyes, from the research I had done online Stargardts did seem a possibility especially after one visit when I phoned up to get the results and was told that they were looking into genetic defects. Finally last week I was given a diagnosis. I have Stargardts, a juvenile macular dystrophy. I was told that there are no treatments yet but maybe in the future, at the moment my eyesight is good and I will have no problem with eye tests for driving and am quite safe to drive but I have to notify the DVLA of the condition and at some point, I don’t know how soon,I will be unable to drive.

My central vision is going to go, I will not be able to read, drive or recognise faces. As my main hobbies are reading, painting and watching TV, when I am not working or ferrying my children around, this is awful news. I have already given up cross stitch because it is so hard to thread a needle even with my glasses and a needle threader. I am really worried about getting around in the future, I will not drive if there is the slightest doubt about safety, I have never driven after even 1 glass of wine, the risk of injuring someone if I am not 100% sure I am safe is too great. I would rather err on the side of caution so I don’t know for how much longer I will be driving. I don’t know what will happen when I can’t read the labels on foods, the wrong thing could, literally, kill my daughter. However now I know what to look for and I should have a number of years to get used to the condition, learn how to manage and put in place plans for when it does become a problem. So that is what this blog will be. A record of how I cope, my thoughts and fears as I get used to living with this diagnosis and how the disease progresses. Wish me luck!

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Posted on March 8, 2012, in Uncategorized and tagged , , , . Bookmark the permalink. Leave a comment.

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