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How were you diagnosed with a rare disease?
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Dorothyann
Dorothyann
Last activity on 06/20/2025 at 11:30 PM
Joined in 2025
Patient, CANVAS since 2025
1 comment posted | 1 in the Cold Agglutinin Disease Forum
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I was diagnosed with Canvas a genetic condition. Initially misdiagnosed with MSA. Hence I've had the condition a while and it has got progressively worse where I need a wheelchair now.
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Courtney_J
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Courtney_J
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Last activity on 08/08/2022 at 11:09 AM
Joined in 2020
1,339 comments posted | 5 in the Cold Agglutinin Disease Forum
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Hello everyone,
How are you doing?
I thought I'd create this discussion to talk about being diagnosed with a rare disease!
What were the first symptoms you experienced? How were you diagnosed?
@AnnNew @Fw8044 @matthewascott @Mona52 @Nguesman @Stepb1 @cabear @Shanar @Khan10 @Pixiestyx @Samkatie500 @ronscreque1981 @JoinerD @Adam64 @JitteryOwl @Serenity1825 @Marnetta @Sherry1005 @Spoongirl09
Feel free to share your fears, doubts and thoughts here! We're all here to help and support one another!
Take care,
Courtney