Dry AMD: What can be done for this frightening... - NRAS

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Dry AMD

Angelicamoth profile image
10 Replies

What can be done for this frightening condition? I’m finding it gradually more difficult to read and my eyesight generally is getting worse. I’ve heard of AIRNERGY but there don’t appear to be proven good results. I would very much welcome hearing about any advice or experiences from fellow sufferers. Also I would be grateful to know which sight aids are best. Anything really. Hoping to hear from you.

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Angelicamoth profile image
Angelicamoth
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10 Replies

Dry AMD is the better if the two. Have been referred to the eye hospital? They should refer you to the right department to get this kind of help they may have an Eye clinic liaisons officer.

Summerrain14 profile image
Summerrain14

Hi, I’m Gail and am an eye clinic liaison officer in the North West of England. I too have recently been diagnosed with RA and am also registered as Blind. I would really recommend a referral to your eye hospital. Most eye hospitals have a low vision clinic where magnifiers can be issued. If you would like me to give you the number for the macular society and put you in touch with your eye clinic liaison officer just let me know. x

Angelicamoth profile image
Angelicamoth in reply toSummerrain14

Thank you for your help. I will get in touch with the eye vision clinic as you recommend. I attend the eye Hospital every four weeks but vision aids haven’t been discussed. I will also join the macular society. If I might ask, is your eye impairment caused by your RA? Or AMD? How are you coping? What I’m beginning to realise is that I must find vision aids ASAP and thanks so much for the tips.

KittyJ profile image
KittyJ in reply toAngelicamoth

In the meantime whilst waiting for your eye clinic appointment you could check visionary.org.uk for any sight loss charities close to you. I’m a volunteer at my local one and we have an aids and equipment

centre which others will have too. They can also help in other ways ie benefits, emotional support. Ihope you find help soon.

Angelicamoth profile image
Angelicamoth in reply toKittyJ

Thanks so much. I’ll do that

helixhelix profile image
helixhelix

My mother had wet AMD, and lived alone so important that she could keep her independence. We splashed out on a full sized digital magnifier for her, a bigger version of this...

amazon.co.uk/VISIONU-Portab...

Angelicamoth profile image
Angelicamoth in reply tohelixhelix

That’s great advice, thank you.

Summerrain14 profile image
Summerrain14

Do you mind me asking what hospital you attend? It is for the injections for your AMD as this is usually for wet AMD. I’m just really keen to help in any way I can as there is so much out there but it is knowing where and how to access it. If I can put you in touch with your local eye clinic liaison officer that would really help with ensuring you are getting the support you need.

I was registered Blind at the age of 4. I’m now 43 so had many many years to adapt. I still have good days and bad days with dealing with my sight loss even now. I have had such fantastic support from my sensory team and employers over the years. My eye condition is due to premature birth but has implications for my RA and Lupus treatment as we need to be careful with certain meds. I have tunnel vision so it is like looking through a straw but have access to a whole range of technology that means I can access printed information independently which is so good. I also use a long cane for getting about. I had been a guide dog owner for 18 years but due to the RA I am no longer fit enough to have another guide dog as it really affects my hands, feet and knees. If I can help with anything at all please just let me know. x

Angelicamoth profile image
Angelicamoth in reply toSummerrain14

I’m amazed to hear your story. You have had so much to bear in your life and have such a courageous attitude. As you kindly enquire, I have dry AMD but it is suspected it is about to turn wet which is why I visit the hospital regularly. I am going to follow all your advice and thanks. How do you cope with the pain of your RA? And getting about for your daily needs? I am hoping you have the constant assistance that you need from people who are as kind and generous with their help as you are.

Summerrain14 profile image
Summerrain14 in reply toAngelicamoth

You are more than welcome. If you need anything further do just ask won’t you. Ah I completely understand about your AMD. I am so pleased you are being monitored so closely too.

I am finding the pain hard to deal with some days and am constantly shattered and just try to take each day at a time. The fatigue is the hardest thing for me at the moment. I’m hoping that we will find a good regime of medication that works well and I can continue to work as I love my job. I am so lucky to have such lovely people around me who are always willing to lend a hand if needed. Take really good care won’t you and hope that you get the information and support too.

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