You may have been aware, but at the start of October, we created and uploaded our first learning programme about AMD. This is something anyone can access to learn more about Macular Conditions. We are wanting to create more about different topics, but our first one is about Understanding AMD which goes into detail about AMD and Charles Bonnet Syndrome.
As we create more programmes, I will have the links to each programme here.
I can thoroughly recommend this - especially how someone with macular sees the world - to friends and relatives. Would be great shown to people in hospital to those caring for elderly who have not come across this. My elderly brother, when alive, was registered blind through AMD. Because he didn’t ‘look blind’ as people said and followed a person talking, he wasn’t always taken seriously as sight impaired.
Might I suggest e-mailing this to GP surgeries? The Gps I have seen -( 5 out of a team of 10) knew nothing about the condition!! One even told me "tough luck " and to come back when I got it my right eye. I even had to wait a week when I was feeling very down/suicidal. I even told the GPs of my feelings and they did absolutely nothing!! Luckily I found another form of support and this one didn't walk away. Just because you cannot see the disability doesn't mean it is less important. I found my GPs to be rude ,dismissive and uncaring.
That's awful 3ff. What a terrible attitude for a GP to have, I would be tempted to make a complaint about that as if they are not corrected, they go on doing it to other people. x
Thank you for your feedback, we do continually try and work alongside medical professionals to raise awareness of the condition and to ensure patients aren't just "put to one side" after being told they have MD. This is an ongoing process, I will pass on your feedback to the team here, we appreciate your comments
How can I find if my conditon is macular related? I can see similar conditions mentioned like PIC but not idiopathic multifocal choroiditis which I have been diagnosed with.Thanks
I have checked with our research department, and they have come back with the following information, which you could use as a discussion point with your ophthalmologist:
"This conditions seems to have the potential to impact the macular in some cases but generally affects the wider retina."
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