CAPOS in Lower Mainland

Hey everyone!

I am excited about a lot of things: mainly that spring is coming!  Yesterday I was out walking and took off my coat for a spell!  The sun was  very warm!

But in connection to CAPOS, I have been informed by my new ataxia specialist at Vancouver General Hospital that she is aware of 3 other people with CAPOS in the Lower Mainland (which is to say Metro Vancouver)!

Plus, my wife, who works as a deafblind intervenor, was told by the school board deafblind specialist that there is a family with CAPOS somewhere in the Lower Mainland!

That’s four CAPOS families!

What’s more?  I met an old friend recently, I chatted about CAPOS, and she mentioned to me that she has a friend with CAPOS!

That is five people or families with CAPOS in the Lower Mainland.  A freaking hotbed of people with CAPOS!

My ataxia doctor did mention the humbling fact that there are a grand total of 30 cases of confirmed CAPOS in the world!  And 6 of them live in the Lower Mainland!  What are the odds!  I am beyond belief!

I hope that the families will contact me!  CAPOS Individuals, you are not alone!

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The big five parts of capos

Cerebellar ataxia

Areflexia

Pes cavus

Optic atrophy

Sensorineural hearing loss

Talk

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Please reach out to me: capos2068@icloud.com. Thank you!

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