I am 40 and have been diagnosed with wet A... - Macular Society

Macular Society

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I am 40 and have been diagnosed with wet AMD in both eyes. Does anyone know anyone else this young with the condition?

LouLou2206 profile image
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LouLou2206 profile image
LouLou2206
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Rosalyn-helpline profile image
Rosalyn-helplinePartner

Hello,

I am very sorry to hear about your recent diagnosis.

The Macular Society has a network of groups around the country, including several groups specifically for individuals of working age with macular. In addition, the society has a free befriending service on the phone. Individuals can ask to be matched with a volunteer based on their age, interests or type of macular condition, or a combination of those factors. Please contact the society's Helpline on 0300 3030 111 for more information.

You have not mentioned whether you are receiving any treatment for wet. Just to make you aware that the Royal College guidelines are that the time span from identification to treatment should be no more than two weeks.

Kind regards.

LouLou2206 profile image
LouLou2206

Thank you.

I was only diagnosed on Thursday and am seeing a specialist this Wednesday to see what treatment, if any, will be done. I have no problem with my sight at the moment. I do wear glasses but they are for short sightedness and so i wonder the effects if both my distance vision and central vision will deteriorate.

LouLou2206 profile image
LouLou2206

Just reading your last line there. Optician did notice it in October but did not make out it was serious but that they would send a referral. I had to chase this up and so it has been 7 months since it was first noticed. I take it that may not be a good thing?

[erased]

crazyquilter profile image
crazyquilter

Lou Lou, I was diagnosed with dry amd by my optition 2 years previous to finding out it had gone wet. I paid no attention whatsoever as I assumed it took a long time (maybe even the rest of my life) before it would cause me any problem, if ever. I didn't know a thing about dry amd. Pretty stupid on reflection. He told me it was minimal and to eat lots of greens - end of story at that time I thought. No one told me anything different. Finding out later it had gone wet, was a huge nasty surprise and it was only found because I couldn't stop one eye from watering after contracting conjunctivitis, which wasn't related. So that was a blessing in disguise. I am just telling you this because it was a 2 year period for me, no referral like you have (which is great). Don't worry, the very best treatment is there for you and anyone else who is stunned by their diagnosis. I am sure you will follow all the advice given and the way I look at it is, at your young age, your body will respond quicker than mine at 70, and I have had fantastic results. Don't despair as I say, there are amazing things the nhs can do for you.,

LouLou2206 profile image
LouLou2206

Thanks Crazyquliter. I have started today with a higher intake of greens and fish and will follow the 'Mediterranean diet' As you say it is a stunning shock to go from nothing to this. before October I had not been for an eye test for three years so no idea how long ago it started. I had never heard of MD before then and thought it would be Myopic and not AMD

I am grateful for this forum, as already i feel a little more positive. Will see on Wednesday if I am eligible for treatment and if so, which one and go from there. :-)

AlinaL profile image
AlinaL

Hi,

I was 45 yrs old when I got wet MD in one eye. I noticed my eyesight wasn't right in Nov, went to the optician on 31 Dec and they spotted the bleed as they have an OCT scanner. My first treatment wasn't until 29 Feb by which time I had lost all of the central vision in my eye.

I was very lucky, I had 3 Avastin injections which stopped the bleed and actually restored my vision. I know I'm in a small % of people that have their sight restored but the consultant thinks my age was working for me.

So good luck, get treatment as quickly as possible, prepare for the worst and hope for the best.

Best wishes

LouLou2206 profile image
LouLou2206

Thank you Alinal. The pictures I remember from the optician looked like the dry form, so i am now wondering if it has changed to wet since October. I will ask tomorrow, I was told AMD on Thursday but not which one. I am assuming wet as laser surgery was mentioned. Many thanks for the encouragement, it is great to hear that success stories are out there. just need to wait and see if I'm lucky.

AMDleft profile image
AMDleft

Hi loulou2206

I was diagnosed last year with wet in one eye at the age of 45 and like you had never heard of MD (I think i am too young to call it AMD Ha,) I had three avastian injections last year and am currently on my second round of injections. The first round of injection were effective and this is why I am having injections again as it has gone slightly wet again and I am glad to be keeping on top of things. Just to advise that there is different kinds of MD so you might want to ask your consultant about that.

Best wishes for tomorrow.

Joan

LouLou2206 profile image
LouLou2206

Thanks AMDleft. My first question tomorrow is what type! Were the injections on the NHS or did you go private? Looks like lots of folk have had good results. Laser treatment was mentioned as a possibility but as my sight is very good, first consultant said he would not go down that route. Injection, as much as it terrifies me, seems the better option.

AMDleft profile image
AMDleft

Hi LouLou2206

hope you got on well and you are getting the required treatment. laser treatment was also mentioned to me but i need to have a ICG (i think i have got it right) angiography which gives deeper imagine of the back of the eye and macular which i will get done after my third injection.

Best wishes

LouLou2206 profile image
LouLou2206

Afternoon All. Turns out I do not have AMD of any description, I am very happy about that. First consultant said it was but he then sent me to his colleague and he said it is not and I have 'deposits' at the back of my eye similar to AMD. Have to have kidney's checked and if they are well, I have to have eyes checked every 6 months. Thank you all for your support and hope you continue to get good results from your treatment. x

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