Doyens Honeycomb Retinal Dystrophy also known as Famillia Dominant Drusen

[Jazzywoman]

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.

[Hidden]

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 in reply to Hidden]

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

[Hidden in reply to Jazzywoman]

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]

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 in reply to Hrosie]

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 in reply to Jazzywoman]

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

[RosMacularSociety Partner]

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

[e-mail]