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Happy Rare Disease Day!!
Good morning!
Happy Rare Disease Day! This is OUR day!
I wanted to share a few facts about rare diseases in general with you!
I know most of you know that LEMS is considered ultra rare, but did you know “LEMS affects up to 3,000 people in the US—up to 50% of whom are currently undiagnosed or misdiagnosed?”
The average diagnosis time period for LEMS is 4.4 years! This is something we all can work together to spread awareness and decrease this time!
LEMS patients are also misdiagnosed often with Myasthenia Gravis (35%), Myopathies (28%), Peripheral Neuropathy (13%), spinal cord injuries (10%), and depression/other (11%).
I found a couple of stories LEMS patients have shared on the Rare Disease Day website and wanted to share them with you.
If you haven’t already, we would love to hear your story in Introductions or you can also share your story on the Rare Disease Day website and on your social media accounts!
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