Doyens Honeycomb Retinal Dystrophy also kn... - Macular Society

Macular Society

5,258 members2,602 posts

Doyens Honeycomb Retinal Dystrophy also known as Famillia Dominant Drusen

Jazzywoman profile image
7 Replies

I have a rare eye condition that is caused by a faulty gene.

Doyens Honeycomb Retinal Dystrophy otherwise known as Famillia Dominant Drusen.

Im patcially sighted in my right eye other eye isn't so bad at the moment and I am still able to work which is fab.

My Question is I do need a good light to see what I'm looking at but the light and concentrating on what I'm looking at is making me have eye strain and headache to a point that I really don't want to look at anything for a while and just need to shut the light out and have to close my eyes to rest them.

I work for the NHS constantly looking at fine detail and also P. C throughout the day.

Any advice would be appreciated.

Written by
Jazzywoman profile image
Jazzywoman
To view profiles and participate in discussions please or .
Read more about...
7 Replies

Hi I work for NHS too. Get a manager referral to occupational health. Occ health will likely mandate regular breaks for you and get the right people to do a risk assessment on your workstation ( sorry, cant recall what they're called, I'll check and see if I can find it). They will recommend such things as larger screen, black and yellow keyboard, task light that can be switched off, dimming of ceiling light etc. to reduce glare. There are a range of handheld/ video magnifiers for non pc work. Because it's H&S related there should be no budget constraints on purchasing whatever you need.

You might find that windows pc screen magnifier helps - check out the accessibility settings. I find it's good for basic pc use but some NHS specific applications don't enlarge enough for me ( or enlarge but then you lose some important fields). Making reasonable changes to your job to manage things like this is also part of what the employer should do.

If there are any problems getting what you need contact the gov Access to Work scheme which covers over and above the "reasonable " changes an employer is expected to make for you. They are excellent.

Jazzywoman profile image
Jazzywoman in reply to

Good MorningThank you for your reply I am waiting for the Occupational health to make an appointment for someone to come into my workplace and assess where I have issues.

At the moment I am working in one specific area of my department as its the easiest for me and can manage to get on with my work although a little slower.

And with a little more concentration.

The information you have given is great thank you good luck with your journey x

in reply toJazzywoman

You're welcome x I found i had to call the assessment team myself to get things moving as no-one seemed to have any sense of urgency but maybe your hospital OH will be quicker ;)

Hrosie profile image
Hrosie

Hello - I have AMD and similar problem with light. To help I use several aids including large screen PC + built in magnifier if I need it, yellow UV blocking overglasses (recommended by doctors at NHS eye clinic & supplied by my local Sight Support team). The aid I use mostly is a visor, or peak, that I wear to shade my eyes - good indoors under strong lighting or outside in strong sunlight. I always describe my problem as needing light on the subject I'm looking at but not directly into my eyes . I hope this information helps. Best wishes.

Jazzywoman profile image
Jazzywoman in reply toHrosie

Thank you for your reply I'm the same I need really good light to see the things in front of me, but don't lihe direct light into my eyes they are really sensitive to light.My optician is putting a coating on my lenses it's meant to help with blue light that comes from P. C. and indoor lighting

I will give them a go but apparently don't work for everyone so my £189 investment maybe a waste of time and money we will see but I'm crossing fingers as by the end of the day I don't want to look at anymore light

Good luck with your journey x

Hrosie profile image
Hrosie in reply toJazzywoman

Glad I could help a little. My glasses also have the coating for blue light but I think it's that along with a combination of other things that helps. It's especially bad right now with the extremely bright sunlight we're getting along with the brightness of the snow. It is complicated but keep trying. Best wishes. x

Rosalyn-helpline profile image
Rosalyn-helplinePartner

Dear Jazzywoman,

The following link may be of assistance:

macularsociety.org/support/...

Please contact us direct for details of suppliers of anti-glare filters.

As has been mentioned, it may be worth considering the yellow ones for indoor use, as they do not reduce the amount of light coming in, but they do help to eradicate the discomfort from any glare from computer screens, lighting etc.

In addition, we do have a Working Age and Young People's group (WAYP) which may be of help to you:

macularsociety.org/support/...

Kind regards,

Macular Society Advice and Information Service

0300 3030 111

help@macularsociety.org

Not what you're looking for?

You may also like...

Newly diagnosed dry MD .. and a bit confused

Age (nearly) 67 .. had my first eye test last week and (guess what) the optician has diagnosed dry...
Pigosoratus profile image

I seem to be collecting new eye problems.

Early appointment at Macular clinic today. Eye test and Consultant visit. Good news to start as no...
2468G profile image

Strange light

Hi. Just had third eylea Injection for CNV not sure what happens next. For the past 6 or 7 weeks I...
2468G profile image

I’ve recently joined the wet macula brigade unfortunately!

It good to have a forum to chat with people already diagnosed, I am 69 with one eye wet and the...
MacularAnn profile image

Newly diagnosed with wet amd, what a shock!

I've recently been diagnoses with wet amd in my right (dominant) eye and I'm waiting for my first...
Sukie1903 profile image

Moderation team

See all

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.