Living with superficial siderosis – the patient’s journey
Infratentorial superficial siderosis (iSS) is more commonly known as superficial siderosis of the central nervous system. It is a rare but sometimes disabling neurological condition that often affects hearing, balance, and mobility. Other symptoms, including memory and thinking problems, are also reported but seem to be less common.
Because of its rarity, there is limited information about this condition for patients, their carers, and families. Furthermore, clinicians and researchers have limited opportunities to meet and work with patients with iSS to understand better patients’ needs and experience of living with iSS. Such partnership is important to decide on the optimal directions for further research.
At UCL, a dedicated team of clinical researchers is working with patients on several projects on iSS. We would like to share our experience from the patient, clinician, and researcher perspectives, by hosting a dedicated information-sharing virtual event that is timed to mark Rare Disease Day and the World Hearing Day.
We hope that our event can be an additional and important source of information for patients newly diagnosed and living with iSS, their carers and families, clinicians, and interested members of the public.
We would like to invite you to join us on the 18th February 2022 between 2 and 3 pm (UTC/UK time).
Please follow this link to join the event on the day: https://ucl.zoom.us/j/91205318089
For more information, please visit: https://www.ucl.ac.uk/stroke/patients-carers-and-public/infratentorial-superficial-siderosis-central-nervous-system
If you have any questions for the panel, please submit them here: https://app.sli.do/event/uig6tz4VVLwFp93nfQquNG
