Wet MD in both eyes: I have been trying to... - Macular Society

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Wet MD in both eyes

Helen0303 profile image
11 Replies

I have been trying to research to get an estimated time, 5 10 15 years, before blindness. I know it is different for everyone but even a five to ten year estimate that would give me an idea would be great. I have been receiving injection treatments for my left eye and recently I am beginning to have issues with the right as well. Any input or experiences you could share would be appreciated.

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Helen0303 profile image
Helen0303
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11 Replies
Helen0303 profile image
Helen0303

I forgot to mention I am only 38 years old.

Hi Helen, sending you a hug x sounds like you are coping with a lot at a relatively young age .

My only advice is "prepare for the worst, hope for the best".

Apart from having the treatment, dietary enhancements, and reducing stress I don't think there is anything else you can do so in that sense timescales are irrelevant.

Live your life in the moment, make plans with your family like anyone else, and don't waste a moment on unanswerable questions x

Treatment works for the vast majority so focus on that and take the rest as it comes x

The macular society can give you lots of emotional and practical support to help you come to terms with things. Wishing you all the best going forward xxx

boyosww profile image
boyosww in reply to

Hiya I have been told that there is only a 30% chance of a improvement in my eye after injections have had three now so god knows how many I will have to have for any change in my sight

in reply toboyosww

Hiya boyosww,

We are all different and different conditions too. Inj work after 3 for some. Others may get up to 10 or so before it works.

I have brvo, had 19 Lucentis now on 4th eyelea. Some with wetmd have had many more Lucentis. No-one knows, you just have to go with the flow.

The inj are really to stabilise , prevent worsening. Any actual improvement is a bonus although they often do help (I noticed a difference).

Best of luck to yo u going forward.

carolineJames profile image
carolineJames

HELEN,

Helen0303,

It sucks doesn't it?! Everyone varies and we all know that's no help when you're in a state of panic and worry. I have this horrid disease and it's in my family - so I can give you only knowledge based on my older relatives experience . About 15 years ( providing no one finds a better treatment or cure by then) your eyes will become troublesome. Sewing will be a problem and possibly driving. After twenty years you'll find reading a book difficult. But the thing is/ this is only based on my family's experiences. Who knows for you? And medicine in this field is improving all the time. Moorfields Hospital in London are doing some amazing work- so are the Japanese and Americans .

Look, it's like being pregnant with a baby- eat the right things, do the right things, keep yourself well and hope for the best!

Group hug...

carolineJames profile image
carolineJames

Mmmm... probably the pregnancy thing wasn't a great comparison. But you get the idea; eat correctly, exercise correctly, ensure you take the correct vitamins and go for medical checkups. And stop stressing! It won't help.

Sending hugs .

Macular_1 profile image
Macular_1

Hello Helen,

I am so sorry to learn about your wet macular degeneration.

You are very young to have developed the condition. Has the hospital told you the reason behind it? Are you diabetic or myopic (short sighted)?

As the other posters have said, it is impossible to give you an idea as to how quickly your sight will deteriorate. Everyone is different.

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

Also, if you would like to take advantage of 6 months free membership of the Macular Society, please see the following link for more details;

macularsociety.org/6months

Best wishes

Macular Society

Amanda58 profile image
Amanda58

Be positive. My husband was diagnosed 3 years ago with WMD in his left eye and started the injections. A year ago the problem started in his right eye, he started having injections. He has a scan on his eyes every six weeks. Since January he hasn't needed injections. He has been told now to go for the scan in six weeks but not to wait in out patients , they will call him if he needs an injection. He does take a Macushield capsule each day.

Ayayay80 profile image
Ayayay80

Hi Helen

It is worrying, isn't it. You are so young for this to happen to you. I am so sorry. But I think most of us, whatever the age, have gone through the roller-coaster emotions, wondering when we might lose our central vision completely - tomorrow, next week, next year, in ten years time? Hopefully, it will never happen; medicine is progressing all the time. But the short answer is that not even the specialists can predict with certainty your outcome. It depends on numerous things - on underlying eye conditions of which there a numerous types, on your genetic make-up which may help to determine how well your eyes respond to treatment, on life style and diet, although I seem to be one of the few who believe that maybe too much emphasis is placed on this; nothing has actually been definitely proven either way. Anyway in most clinical trials there has to be a control group, but that is not relevant here.

Apart from that I agree with what eyesright and some of the others have already said. Make the most of every day and do not dwell on what may be in 5, 10, or 20 years. I wish you all the best and send you a big hug. x

JJnan profile image
JJnan

Hi Helen, 38 is very young to have this, as others have said nobody can give a time limit, there is research into it, so may be a breakthrough one day, (((("))))xxx

Helen0303 profile image
Helen0303

Thank you so much everyone for the responses. The Dr.s said that it is rare for someone my age to get it without diabetes or another condition. They basically told me they don't know why it happened. Which makes it that much more frustrating.

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