I am 35 and have been told I have macular degeneration. 2 months down the line I am still waiting for my hospital appointment which I am hoping will give me more information. The Macular Society has been a great source of information. I know a prognosis is difficult for the condition but I am interested in other people's experience. How have others found the progression of MD? Has it been very slow? Has anyone diagnosed younger had to therefore deal with the worse end of the scale at a younger age than others? I would appreciate any feedback. Thanks
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Nimble82
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Hi, I am sorry to hear of your diagnosis and think that you are right, the hospital will hopefully be able to tell you much more about your own situation. The Macular Society are a great source of support and as you say, no one can give an accurate prognosis of how fast anyone's condition will develop. It’s also worth knowing that there are many other types of macular degeneration aswell as AMD that are not age related and affect much younger people, some are referred to together as the juvenile dystrophies and there is also myopic macular degeneration, which can affect people who are very short sighted at any age. Sometimes when someone is told they have Macular degeneration at a very young age, it later turns out to be one of these. The course of these conditions all vary. There are leaflets about them on the Macular Society website, but they may be more helpful once you have some information about which type of condition yours is. If at any point you want, there are also several Macular Society working age support groups around the country, details via the Society. Good luck and hoping your appointment comes soon.
You don't say who told you of your MD. Are you sure you have been referred to the hospital? Opticians do not always do so, especially if they think you don't need treatment yet. If I were you I would contact the hospital appointments department and check with them.
Hi, thanks for your reply. Yes the optician told me and showed me the pictures. He booked me back in for the dilation but was concerned so bumped off his next patient and did it there and then. He sent the referral to the gp with a request of within 2 weeks (on 2nd Nov). I have had to chase up and have local hospital appointment with the earliest availability of 18th Feb!! It was the lovely staff at the Macular Society who advised me to request a retinal specialist so I'm waiting on that!
Hi nimble. You asked about others diagnosed at a young age, I'm 31 and have MD, was diagnosed at 29. As the others have said push for an appointment because depending on what type of MD you have that 2 months can make a huge difference to your vision as I found out.
loopylooz is right! Write a very firm, beseeching even, letter to Health Authority/hospital. It seems amazing, (please don't let this frighten you), despite the fact that MD is a major source of blindness in the country, how ignorant and laid back some health professionals are about it!! Your case should be treated with greater urgency to establish what stage it's at and how it should be treated, Not left to "stagnate" until Feb. That's disgraceful.
I'm lucky, my AMD didn't develop until my 70s. Even so I was let down, firstly by my optician, which meant initially I had to go private for first treatment, but also had to fight like stink to get subsequent treatment on NHS with treatment dates ON TIME. I was STGGERED at the indifferentand, dare I say it, uncaring attitude I faced. ("Cutbacks, you know"). However I wrote a real hum-dinger of a letter to the HA/trust with copies to my GP and MP (extremely helpful), and involved the Macular Society too. This resulted in there being more clinics organised, so I and others could get treatments on time.
I know the NHS is under huge pressure, but it, (and some opticians), need to wake up to MD a bit more. Good luck, and carry on getting help from the Macular Society.
Thank you Fed12, I will be taking this on board. I agree in that I know the strain on the NHS but that it's not really acceptable. Well done you for getting improvements in the system for others!
Yes I fully agree with you. I went for an eye test and was told I had AMD and should go to Holland and Barrett. I was in a state of shock but the optician said said lots of people have it!!! I asked if they would inform my GP but they said I'd had it twelve years according to my medical records!! I was stunned! I did know what it was but no one had ever told me I had it? My late mother-in-law had it so I was aware of the condition. I paid to see a consultant but he suggested I take Areds2. End of story.
Did the optometrist do a referral via the GP due to suspected wet AMD or is it the case that the optometrist referred you due to your age but saw no signs of wet AMD? If you are unsure, it is important that you ring the optometrist and check.
If the optometrist identifies possible wet AMD, then the Royal College of Ophthalmology guidelines indicate that they must do a fast track referral on the day of the appointment, via fax or email, straight through to the eye clinic, so that the individual can be seen and treated by 2 weeks. This therefore indicates the urgency of the situation. Treatment is usually via injection.
If the optometrist did a referral due to suspected wet AMD please ring us as soon as possible. You cannot wait until 18 February.
I am copying our link to a Guide to wet AMD which outlines the treatment that you should expect on the NHS:
What rotten luck. I was originally diagnosed at my 2 yearly check Up with the optician, Went through the referral process and started regular visits to the Western Eye Hospital in 2006. The condition only got noticeably disabling in 2015 when I was 85.
Being younger, you should have more years of working vision than I had and are likely to be more IT savvy. Certainly join the macular Society.Their latest newsletter has an excellent piece on relevant apps .good luck
Thank you SusanTL, I find learning of others experiences useful. I will join the Macular Society and as you say, more technology advances may go in my favour.
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