Diagnosed with macular dystrophy, does anyone have any knowledge experience with eyes and to talk me down a bit? I'm freaking out massively

[Dogsandchocolaterule]

Im after some help or advice or reassurance from anyone that knows anything about eyes or macular degeneration.

I was diagnosed today with macular degeneration, I'm 40 and I'm freaking out and the more I read and research the more I feel sick with worry.

I even had a flash of I don't think I can live with this go through my mind. I know it's extreme but the thought of going blind and not seeing my son grow up is unbearable. I don't know what to do.

Does anyone have this and is managing ok? Does anyone have family members that are struggling with this? I don't know how to cope.

Is it macular dystrophy or degeneration? I'd definitely speak to the macular society and your hospital eye clinic should have an eye clinic liaison officer. The best advice will be tailored to your diagnosis and prognosis can be different.

Getting a diagnosis is a shock. Take a deep breath and take each day as it comes.
Your son needs you today (and that will be true of every day in the future regardless of how good or bad your vision may be).

Were you diagnosed with vitelliform macular dystrophy? The shorter term prognosis is better than with older people who have AMD (age-related macular degeneration)

People with macular disease although sometimes are registered blind, often retain a lot of visual function, so although they can't see things in fine detail, they can still get around properly and see using other parts of the retina which aren't affected. You'll be able to see your son.

Thank you, I think I have calmed down a bit.

Sobbed all the way on the drive to work today and just kept it in when I got there, as I don't think I can handle telling anyone at work yet.

My biggest fears are not seeing my son, not being able to drive or read, but from my research I think I will retain some vision, maybe. But I could lose most of it in 10 years. So by 50 my life could be completely different and not what I thought my future would be.

The part of becoming registered blind absolutely terrifies me. I can't believe this is happening, in my head I am young, healthy, don't smoke or drink and eat relatively healthy. How am I going blind when no one in my family has? Worried I passed this into my son. So much worry I have felt sick all day.

What condition have you been diagnosed with OP? That will help giving advice with prognosis. Most of the information out there relates to AMD (which you’re too young to have)

Please please do not panic, I was diagnosed with Macular Degeneration (wet in one eye and dry in the other) 5 years ago in my late 40’s and my eyesight (with glasses) is still pretty much perfect. A lot of the info online is out of date and the ‘10 years till blind’ information really is not the vast majority of people’s experience - most people retain good vision. Please call the Macular Society they will give you the best advice. If you want to message me please do.

I have a friend who was diagnosed with a different condition at a similar age, about 15 years ago. He found having to stop driving one of the hardest things, as he loved driving. I would find it an inconvenience, but I wouldn't be so gutted about it.

His condition means he's often stable for a period, then there's another deterioration. Last year, he was able to make out that a team on the TV were wearing red socks, which delighted him. Recently, things have gone downhill again, and he can't really make out faces now - and I could see, when I last saw him, that he was having to feel for things more in the kitchen. His colour vision is now gone entirely. He is struggling mentally with the latest changes.

But he's still living independently. He gets lifts from people to the supermarket and so on. He's excellent at his job in a school, and they are really supportive of him. He can walk into town from his house - he has a white stick and his progress is slower than sighted people, but he can do it, so he can get his hair cut and tobthe dentist and so on.

His phone and TV has voice recognition - technology can really help these days - it can read emails and so on. Steps down are difficult as he has little depth perception, and being with him makes me aware of high/low contrast things. He has a lot of black and white in his house and good lighting, as that all works with what vision he has left.

He's on a waiting list for a guide dog.

It is shit, but it's not impossible. It is obviously a huge impact on his life, but for me, in many ways, it is one of the least important things about him. It doesn't stop him being interesting, thoughtful, intelligent, educated. Sight is only part of him, and it's only part of you, even if it doesn't feel like it right now.

There are various charities out there to offer advice. Understanding how your condition is likely to progress will help you prepare for it, and it is easier with current technology than it would have been 20 or 50 years ago, so start finding out about the options before you really need them.

Thank you yes I have been doing lots of research on the Macular society and RNIB, watching YouTube videos etc.

I have been referred to a retina specialist as the ophthalmologist was shocked when he was looking at my OCT scans. He said I see this kind of deterioration in 70 year olds not 40 year olds. Was asking if anyone had gone blind young in my family or any babies were born blind? Bloomin terrying questions really.

@Mahalie I don't know how to message in this app? But would love to chat to you.

Sorry you've been diagnosed with this op, it must be a huge shock. As others have said - speak too or go onto the website for the charities related to find out more rather than generic googling as that can make things feel so much worse in my experience. My dad was diagnosed with this a few years ago, he will be 70 this year and he is diabetic. He has always worn glasses and DVLA are aware but he is still able to drive. I think everyone has different experiences

That's amazing he is still driving. Losing my ability to drive and therefore get to work will be such a loss to who I am. I'm hoping I can do that and work as long as possible. I love my job and giving up my career will be devastating.

Hopefully it's years away. But the more I read the more I hear stories that people are registered blind at 50 and I'm almost throwing up with the realisation.

OP had you noticed many symptoms or was it an unexpected finding at your eye test?

Macular degeneration can affect people to different degrees. I've known many patients with AMD (most commonly dry) and many have a slow progression and usually complain about reading small text and vision in poor lighting. I've also known patients with wet AMD and if detected early, treatment tends to be more effective at conserving as much vision as possible.

Of course there are patients that unfortunately do go blind but this is not the majority. I would wait for your referral appointment to hear more from a specialist.

Wish you all the best

Just want to reassure you OP, my grandmother was diagnosed with macular degeneration in her 50s and is now in her 90s and isn’t blind! It obviously affects people differently but just wanted to give you some hope 😊

My Mum was diagnosed with a specific kind of this in her 40s. She is now late 70s and her eyes have got no worse at all. In fact her eyes are the one bit of her that are basically okay.

I know it is scary but not all kinds are anything like as bad as they may lead you to believe. Mum was told she would have very little sight within a few months and it couldn't be further from the truth.

Only speaking from my recent experience with my DD who is only 20. She has been diagnosed with PIC - punctate inner choroidopathy (after being wrongly diagnosed with Wet MD 3 years ago) The treatment for both is the same - an anti-VEGF injection to close any leaking blood vessels which cause the distortion. Have you had a proper diagnosis to say its Wet or dry AMD and a treatment plan?

Anyway, you might imagine that my DD has been through every emotion going since she had another flare up - this was over christmas period. We ended up going private to see a consultant as couldnt get an appt with eye hospital and then was referred back into the NHS at another out of area hospital. Only then did we get some proper investigation / blood test/ angiogram/xray and tests to find the cause. Shes since had another anti-VEGF injection which has stopped the visual disturbance to her central vision and she'll get regular monitoring.

The macular society youtube channel is great for information, they do alot of videos covering different eye conditions and its not put across in a way that makes you worry even more.

I saw the retina specialist this week (I went private and paid £250) as I'm still on the referral through the NHS but it could take 6 months and I just couldn't wait feeling so sick with worry.

So I put it on a credit card and went to see him. He was really nice and talked through everything clearly and diagnosed me with startgardts disease, which is essentially juvenile macular degeneration. So back to feeling sick with worry again. I swear I will get a stomach ulcer before I lose my vision!

I am very sorry that this has happened to you, OP.
https://www.moorfields.nhs.uk/condition/stargardt-disease#:~:text=Treatments%20for%20Stargardt's&text=At%20the%20moment%2C%20Stargardt's%20is,investigation%2C%20including%20stem%20cell%20therapies.
Apparently it is very important to wear UV-protective sunglasses, if you do not already, and make sure you are not exposed to second-hand smoke. Some therapies are under investigation. I hope you are able to keep your vision until they come up with an effective treatment.
💗

Hi Try not to stress I'm 36 and was recently diagnosed with PIC which is similar. I have flare ups and my left eye misewell be a right off. You do ADJUST I promise you ! I'm still driving and doing all the normal day to day things. I also had to go private for a diagnosis. Look on Facebook for groups they've been great for me and gave me loads of info ! Msg me if you wanna chat x

@Dogsandchocolaterule how have you been getting on with getting help following the Stargardt diagnosis. My ds who is 29 was diagnosed mid March with Stargardts and like you is deeply shocked and worried about his future.

I know this is a old thread, but both of my children have stargardts disease! They are 20 and 14, always happy to have a chat if you need it as I know dealing with sightlosss can be a lonely place xx