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Community Building and Management

When Your Journey to Diagnosis Takes a Years-Long Detour [Video]

They thought they had Alzheimer’s disease. They even dedicated their lives to advocating for the Alzheimer’s community. Then, they had the opportunity to take PET scans and learned their doctors had been wrong.

Imagine being diagnosed with Alzheimer’s in your early 60s and leaving your career, only to find out years later that you had no signs of Alzheimer’s pathology in your brain.

Among our 2024 Live Talks, I spoke with two women who have been living with what they thought was Alzheimer’s — and devoting themselves to advocacy for the Alzheimer’s community — only to find out almost a decade later that there was no beta-amyloid plaque in their brains.

LuPita Gutierrez-Parker and Doreen Monks were both finally able to get PET scans to see if they qualified for new Alzheimer’s monoclonal antibody therapies — only to discover they have been living with the wrong diagnosis.

For Years They Lived With Alzheimer’s. Then New Information Came to Light

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