Learning about Macular Conditions - Macular Society

Macular Society

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Learning about Macular Conditions

Becky_MacularSociety profile image
14 Replies

Good Morning Everyone,

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.

Understanding AMD:

healthunlocked.com/programs...

Treatment for AMD:

healthunlocked.com/programs...

We hope you like them. Feel free to share these with your friends and family to help them understand too.

All the Best,

Becky :)

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Becky_MacularSociety
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14 Replies
Catseyes235 profile image
Catseyes235

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.

Becky_MacularSociety profile image
Becky_MacularSocietyPartner in reply toCatseyes235

Good Afternoon Catseyes235,

Thank you for your feedback, it's good to know you recommend this and think it'll be a great help to other. We appreciate your comments.

Best Wishes,

Becky :)

Hrosie profile image
Hrosie

Thank you Becky - this was really helpful. xx

Becky_MacularSociety profile image
Becky_MacularSocietyPartner in reply toHrosie

Good Afternoon Hrosie,

Thank you for your feedback, I'm glad it was helpful, we appreciate your comments

Best Wishes,

Becky :)

springcross profile image
springcross

This was really good Becky, my husband and I watched it together and found it very interesting. Many thanks. x

Becky_MacularSociety profile image
Becky_MacularSocietyPartner in reply tospringcross

Good Afternoon Springcross

Thank you for your feedback, I'm glad you and your husband enjoyed it and found it interesting. Appreciate the comments

Best Wishes,

Becky :)

3furryfiends profile image
3furryfiends

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.

springcross profile image
springcross in reply to3furryfiends

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

Becky_MacularSociety profile image
Becky_MacularSocietyPartner in reply to3furryfiends

Good Morning 3furryfriends,

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 :)

All the best

Becky :)

MillyMollyMandy68 profile image
MillyMollyMandy68

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

Rosalyn-helpline profile image
Rosalyn-helplinePartner in reply toMillyMollyMandy68

Hello MillyMollyMandy68,

I will check with our research department for you.

Kind regards,

Macular Society Helpline

Tel 0300 3030 111

Email: help@macularsociety,org

macularsociety.org

Rosalyn-helpline profile image
Rosalyn-helplinePartner in reply toMillyMollyMandy68

Dear MillyMollyMandy68,

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."

eyewiki.aao.org/Idiopathic_...

ophthalmologybreakingnews.c...

Kind regards,

Macular Society Helpline

Tel 0300 3030 111

Email: help@macularsociety,org

macularsociety.org

MillyMollyMandy68 profile image
MillyMollyMandy68

Thank you for your response and the extra information

Georgie_M profile image
Georgie_M

Thanks for this!

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