Is there anyone like me?????

Hi. I was diagnosed with macular degeneration when I was 15 years old. I am now 46. I have been to several specialist throughput the years and this has always been the diagnosis. Now after reading a reply to someone else's post, I'm starting to think this is not possible. I was told by 1 or 2 of these specialist that my condition was like macular degeneration but was called macular dystrophy -meaning it won't get better but it shouldn't get worse. It has been such a struggle for me. I have been legally blind for all these years and I think it may have got a little worse but it's so hard to tell. Is there anyone with a similar situation? Any treatments ? Any suggestions or reccomendations would be greatly appreciated.

13 Replies

  • I am on an American worldwide fb page for MD- the eldest person on it is 82. But there is a girl on it she is 15 years old!! She knows a lot it's not called AMD when its that age.

  • Hello Kneb,

    I am so sorry to hear about your macular condition.

    There are a number of 'macular dystrophies' which nowadays can usually be accurately diagnosed.

    Please see our booklet at the following link for more information;

    If you would like to have a chat with our helpline, please give us a call on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday).

    Best wishes


    Macular Society

  • I'm 29 years old and for the past 2 years I've been having lucentis injections every 6 weeks in both eyes to stop fluid/blood from leaking from the veins in my eyes around the optic nerve. They have not diagnosed anything with me. They feel that it's autoimmune related and something else will show its face to be able to pinpoint what it is. After the 6 week mark the lucentis wears off and the veins start to leak again which has caused a large blind spot in my peripheral vision in both eyes. I guess as long as I keep up with the shots it won't get any worse but i would love to know what's causing it.

    It's an everyday struggle, sending lots of positive vibes your way.


  • It's so hard!! Are you able to drive? I hope they get to the bottom of your problem soon. I can't imagine having to get injections every 6 weeks. Praying answers come your way soon.

  • I am able to drive as the vision I've lost is in my peripheral vision and when both eyes are open the opposite eye makes up for the missing vision.

    It's frustrating for sure but hopefully they'll figure it out :) I'm trying to find people going through the same thing as I am but in 2 years I've yet to find anyone.

  • Hi kneb,

    Yes, I am 57 now, but was first diagnosed with macular degeneration/dystrophy in my 20's although even as a small child I remember having only one good eye. It was really stable until last year when the vision in my "good" eye started to change and I have since been treated with Lucentis injections; my diagnosis last year was myopic CNV although when I went to clinic yesterday they told me there were probably multiple causes such as short-sightedness, age and genetic factors all playing their part. To be honest I don't think they are that interested in what is causing the problem because the treatment is pretty much the same for all three so I am now onto my 6th injection in my good eye and it seems there is now fluid build up in my other eye too so I will have to have injections for both now. I, too, was followed up for many years and told several times that there was no treatment, which indeed there wasn't at the time, and that they couldn't give an accurate diagnosis without a biopsy and that was obviously inappropriate.

    Things have changed tremendously over the past few years as far as diagnosis is concerned, and new drug treatments have been approved for use on the NHS so if you even suspect your vision may have changed, I would suggest you seek medical advice quickly; scarring can occur very rapidly when problems do arise and rapid treatment is essential.

    All I can say is that if they do suggest injections, first of all don't panic; they sound much worse than they are and, for me, the improvement in my vision was really fantastic. Good luck.

  • Thank you for your reply.The thought of injections soulnd horrible but if it helps then I would do it. I'm just afraid I would go through injections and it wouldn't be a significant difference. It helps to know that your injections have helped!

  • Dear kneb what a nightmare for you you poor thing, sounds terrible. Are you in London? Have you ever had an opinion privately ? I went to the London Eye hospital in harley street and they seemed very knowledgeable about everything and very advanced in technology. There are 2 doctors there both called Qureshi you need to see kashif qureshi! He confirmed my diagnosis which was wet and I got injections pretty quickly. Obviously injections on national health. I'm 68 years old and that's bad enough. Courage my friend keep us posted. Hugs from Squinty xx

  • Thank you so much for your reply. I am in the United States. I am going to start looking for a retina specialist and see where that takes me. Hopefully I can get a definite diagnosis and some answes.

  • Good luck xxx💜

  • Hi

    I am 45 i diagnosed as bilateral juvenil macular degeneration at 13 called as stargardt as well. i could not find any treatmen may be stem cells is too hard

  • I have been told mine is Stargardt as well. Andyes, it's very hard.

  • Stargardt is like dry AMD and unfortunately injectipns can not help us as far as i know

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