Maintaining independence with macular disease
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- Опубліковано 12 вер 2024
- For our June My Macular and Me webinar we were joined by patients with different types of macular disease to talk in more detail about the impact their condition has on their lives and how they manage to retain their independence.
Thank you so much for this very interesting and informative Presentation. So interesting to listen to your 3 lovely interesting speakers. Best Wishes to all. Patricia
Thank you for putting this on UA-cam and sharing the experiences
As a fairly recently-diagnosed person with AMD I'm always happy to see the Society's talks and lectures on UA-cam. However, I'm confused by the seemingly contradictory language used in such videos and the blurb provided by the Society. This and other videos talk about :going blind' from the condition, yet the Society's website states 'It’s also important to remember that, no matter how advanced your macular degeneration is, you will not lose all your sight: macular disease is a condition that affects the central vision only. Peripheral vision is not affected.' Is one source unnecessarily alarmist and the other full of false hope? We need consistency in language so as not to confuse new patients about their prognosis, please.
While macular disease does not necessarily result in the complete loss of sight, many individuals with this condition often use the term 'blind' to describe their visual impairment. We understand that the word 'blind' can evoke strong emotions, but it can often help individuals describe a wide range of sight loss, without meaning a complete loss of vision.
As an organisation we are keen to share authentic, personal experiences and will also often use the term 'blind' to reflect an individual’s own words and perception of their sight loss experience. It can also serve as a familiar term to help the wider public understand the impact of macular disease.
Very informative video.
Thank you. Very helpful.
Yes Thank You for sharing webinar on UA-cam it has been most helpful.
Is there an Australian Macular support group such as this group?
Hi Suzi, unfortunately the Macular Society is a UK based charity so we do not have an Australian support group. You are welcome to use our online resources, but I'd recommend you speak to your optometrist to find out if there are any similar charities or organisations local to you that could support you in person.