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Superficial Siderosis of the central nervous system

I'm am 29 years old and experiencing sensioneural hearing loss, ataxia, nystagmus and vestibular dysfuction (loss of balance).  This is caused by Superficial Siderosis, iron deposits from bleeding into the CSF fluid following multiple surgeries in childhood for a brain tumour.

It seams to be very rare.  Is there anyone else suffering from this?

Please get in touch.
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