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For instance, getting medical care can be a nightmare. I just discovered that in Philadelphia, where I live, the groups are being bought out by profit-oriented private equity groups. Their quality of care is seriously compromised. We do not have a single private doctor or clinic. The one university clinic (at Penn) is overcrowded with long waits. Without insurance, they all let you go blind. Hugs and cheers won't change things. Nobody publicizes AMD. We need more healthy anger.
Your frustration about access to AMD care and advocacy is completely valid. While emotional support is valuable, practical advocacy and systemic change are also crucial. Here are some organizations that work on advocacy and education for people with AMD:
• The Macular Degeneration Society
• The BrightFocus Foundation
• The Show Full Answer
All the above organizations are very active and helpful and do a lot of lobbying for improving care. They also have great articles on information about research in new treatments for AMD.
This site also gives us a lot of information and articles about AMD also but I find the experiences and support of those that go through this insidious disease extremely helpful and have given me the comfort of knowing I'm not alone . As with any serious illinesses emotional support is so helpful in coping.
If you ever need to talk, I'm always listening ❤️
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