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The Silent Bleed second
quarterly newsletter
Welcome
To our tiny but tight-knit community.
Being diagnosed with this rare condition can leave you feeling isolated, confused and unsure about what comes next. The classic symptoms of superficial siderosis are hearing loss, ataxia and myelopathy which are difficult enough to deal with on their own, without the misdiagnosis and lack of knowledge you're likely to come across in your journey.
We understand because we've been there too.
Founded in 2015, we're a group of patients, researchers and carers committed to raising awareness, supporting research and looking out for each other.
Our small team is here to listen, connect you with others, provide information and raise money for research.
We're registered as a charity in the U.K. however we help people all over the world.
Our volunteers are our lifeblood
Whether they're organising fun runs or supporting carers day in and day out, they bring our purpose to life. If you'd like to join us, please drop us a line and we'll have a chat about what your skills are and what you'd like to do. We think it's a great way to fight back against a condition that can leave you feeling helpless.
Community
We're proud to work with some amazing people.
The SSRA is working hard to raise funds and awareness in the USA.
Dr Michael Levy at Massachusettes General has been with us since the beginning and we're indebted for his help. He regularly contributes to our Q&A pages so if you have something specific you'd like to find out, please use the search facility at the top of the page. If you can't find what you're looking for, please contact us.
