Hi there, I got told today via a routine eye test that I have macular degeneration the optician said it was only subtle and that it may have been present all my life but because I've had no previous imaging they couldn't be sure. I have been referred to a specialist because of my age. I am absolutely terrified about going blind and have been crying for most of the day. How long will it be before I notice any changes to my vision or is it variable?
Terrified at 28: Hi there, I got told today... - Macular Society
Dear ssk14. I am so sorry to hear of your predicament, but please, please, don't stress yourself out so much. It never makes things any better. I fully understand how you feel and most of us have gone through this rollercoaster of emotional turmoil on being given the news, and for you, being so young to start with this condition, it must be twice as hard to accept. It may well take many years before you notice anything at all. It varies greatly from person to person and even from eye to eye, depending on the underlying condition. Only the opthalmologist will be able to see what is going on in your eyes and will be able to give you a prognosis. Let me send you a big hug. Do keep in touch. We are all with you all the way. ayayay80 x
I am so sorry to read about your current fears. Ayayay80 is so right in terms of what they have stated.
Just to make you aware, the impact of the diagnosis of any eye condition and indeed any stage in the process is generally compared to experiencing bereavement. Individuals frequently go through very similar feelings and responses and in no set order. We do have a free telephone counselling service. Please contact us for further details if this is of interest.
We need the individual’s verbal consent in order to be able to refer them. It takes the lead counsellor a maximum of a week to make the initial call. Our counsellors are fully trained and the majority have sight loss themselves. Sessions consist of approximately 6 of around 45-50 minutes each.
Our helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.
Our email address is: email@example.com
Please do contact us direct for further information, discussion and support.
Macular Society Helpline
Hi ssk, sending you another hug x I cried for a week terrified of going blind. 2 years on with treatment I'm no worse and there are plenty of people here who have had some improvement..
Everything ayayah says is true. Don't let the worry of an unknown tomorrow spoil the happiness of a good today. Best of luck to you going forward x
I am 57 but I was diagnosed with macular degeneration in my early 20's - the vision in my one eye was never good, even as a small child so I never knew anything else. I couldn't tell there was anything wrong with my "good" eye and the changes were picked up on a routine trip to the optician just like yours. I have been monitored over the years, but my vision only started to deteriorate last year.
Just like you I cried and cried when I first found out I had macular degeneration at such a young age and worried about the future. It was 36 years later that my eyes started to deteriorate and by then a treatment had been developed. There are so many new treatments being developed and tested now and I hope that new, less invasive and permanent treatments will be available for you should you need it in future years.
Although I have now developed a kind of wet AMD which my consultant tells me is related to being very short sighted, I have had treatment and still have my vision and can still work and drive so I am very lucky.
So have a good cry and get it out of your system then, when you are feeling stronger, live your life day by day and hope for the best; just be vigilant and report any deterioration in your vision (like wavy lines) straight away.
The Macular Society are great and you can always give them a call if you want to talk things through.
Sending a hug x
I was told the same as you 3 years ago now and it was the biggest shock to my system I think I have ever experienced.
I do feel for you, as at 28 this is a very young age for the condition to show itself.i was 55.
After lots of crying and fear of what the future would hold, also anger and frustration, I have come to accept, to a great extent, my uncertain future.
Let me tell you what I have found that has been useful to me.
1) the Macular Society Counseling and Helpline mentioned above CAN definitely be relied on to help you at this most upsetting stage, and afterwards. They are very understanding and supportive, you should call them
2) after my major research on the internet, talking to eye specialists at the hospital and even going to the lengths of emailing the leader of the American Research on Eye Disorders AREDS2, I found that nobody can estimate when or if eyesight will deteriorate, or how much changes you will experience.
I needed this certainty as I felt it was like a threat hanging over me, but I had to accept this eventually.
3) The AREDS2 American studies recommend food supplements that can slow the development of the dry AMD condition by UK to 25℅ which is very significant.
I use the Butterflies product called Viteyes2 , it is in capsule form and is exactly what the research recommends. Available online
4) There are lots of organisations in place to support us when we eventually have lowering of vision capability, including the Low Vision Service who help provide equipment and practical advice to help continue a fully active and independent lifestyle.
There is also help from Macular Society in the form of telephone buddies, and local support groups where you can regularly meet with others in the same situation as you.
Have a look at the information leaflets available free online at the Macular Society website, as understanding what you have is very helpful in coming to terms with it.
5) if you get very stressed, I found Mindfulness Meditation has given me space in my mind to be able to rest awhile away from the hustle and bustle of daily living, and has helped me to cope. I am sure if you search online there will be a group to learn this near you.
Sending you a big <Hug> as I know you need one right now!!
Best of luck on your journey, keep in touch here
Happy Holidays! I can actually say that I know exactly how you feel. I have been nearsighted my entire life, but was and kind of still am in shock after being diagnosed with myopic macular degeneration with choroidal neovascularization. I am 35 and after extensive training in my profession finally feel that I am growing professionally. Then, I get this shock. I have responded wel to the Eylea injections. I have to go every three to five weeks due to the severity of my disease. I am counting my blessings though. I can drive, work, and do everything I want. I must say that since being diagnosed, I feel that I am on borrowed time in a way. I feel sad but have bouts of hope. Forums like his help. I truly wish you the best!