Dome shaped macular: Hi Everyone, I am... - Macular Society

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Dome shaped macular

LouBoo profile image
8 Replies

Hi Everyone,

I am feeling very low at the moment with an eye condition that cannot be tackled. I have had this condition for 4 years and have had 3 treatments of PDT. The PDT was successful in that it dried up the fluid but it keeps returning some 4 months after PDT. I only had it one eye now I have it in both. I rely on the "good" eye to help me see properly. I am of working age (39) and I wonder if anyone has any suggestions to any devices they use on the computer. I find I transpose my numbers and working with spreadsheets means all the lines are distorted. Any help or suggestions would be appreciated.

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LouBoo profile image
LouBoo
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8 Replies
Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear LouBoo,

Please contact us at the Macular Society Advice and Information Service for discussion.

We are open open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

180164 profile image
180164

Hi I really feel for you I have had numerous pdt treatments over 11 years and unfortunately the fluid always returns I went to rnib for software but I still struggle every day it's so hard explaining to people how you see isn't it ? Hope u get sorted.. mandy

LouBoo profile image
LouBoo in reply to 180164

Thanks Mandy. It's is hard when you have to explain to ppl how you feel and what it's like when they see that from the outside there is nothing wrong with your eyes. It can make you feel incredibly lonely.

alalex101 profile image
alalex101

I have dome shaped macula and so does my brother. I am 59 and continue working. Like you I have subretinal fluid in my left eye causing significant distortion. My last job required me to work with a lot of spreadsheets and numbers which was hard. I magnified everything on the screen with the computer settings. If in the US, remember that employers must provide what you need per our Disability Acts. Look for a low vision center near you to help. If you have a chance to change to another position then consider it. I still use a computer all the time but entering words is easier than numbers and spreadsheets. DSM is rare but there are others with it. It helps me to know of your experience with PDT. I have considered it but was told the fluid would likely come back.

LouBoo profile image
LouBoo in reply to alalex101

Hi. It's interesting that both you and your brother have DSM. have they told you it's hereditary? With PDT it does dry the fluid up for me but for a limited time and then returns. My consultant has said he will repeat but half fluence (lower energy). Still risky but less of a risk than full energy. I'm in the UK and we have the same rights as you in the US.

alalex101 profile image
alalex101 in reply to LouBoo

Yes I have been told it is genetic. Our children are all myopic. The oldest is 34 and an optometrist - inspired by my vision problems. So far none of the children have DSM or degeneration.

Ceri2 profile image
Ceri2

Hi LouBou,

I am sorry to hear that you are finding it hard at the moment. In the U.K. Access to Work can assess you for assistive technology and will pay some of the costs so that your employer doesn’t have to pay all of the bill. I have a lot of distortion too and agree that computer work is exhausting. Personally I find “zoomtext” works for me. As well as the magnification being much better quality than in windows, there are lots of different colour contrast options and the options to highlight and circle the mouse etc. It will also read text to you. If you use an iPhone or an iPad there are lots of inbuilt features which enable you to listen to articles or to magnify. It could be worth finding out if the Macular Society have a working age support group near to where you live, as one of the things that we endlessly discuss at ours is accessible technology. Good luck 🌷

Sending you a hug x

I use a yellow and black keyboard ( rnib kit was v expensive, mine was about £15 online from " expert verdict"); my employer gave me a huge screen which helps and I have settings for large font ( unfortunately two apps I have to use the font can't be enlarged so the days my oedema is bad I don't use the computer as too blurry).

Good luck to you going forward.

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