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- Advocacy
Getting Involved & Raising Awareness
Getting involved in events to raise awareness of superficial siderosis.
Read More » - Best Life
The Cochlear Implant Journey – A Year On
Background It would be an understatement to say it has been life changing for me to have a perception of…
Read More » - Personal Stories
Intervention at Only 23: What May Sound Scary Is a Blessing in Disguise
There aren’t really words to truly describe what it’s like going into brain surgery. I remember seeing a row of…
Read More » - Personal Stories
A Decade of Strength: Gary’s Journey with Superficial Siderosis
It’s hard to believe it’s been 10 years since we began this journey in 2014. When we first received Gary’s…
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Living Your Best Life
- Best Life
The Cochlear Implant Journey – A Year On
Background It would be an understatement to say it has been life changing for me to have a perception of sound again, however, it is totally different from having naturally hearing (and no, I don’t…
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Patient Stories
- Personal Stories
Deborah Hatch
Rare Disease UK “You’re quite a celebrity around here,” my neurologist says, as mum and I meet him in London…
Read More » - Personal Stories
Remembering What it is Like to Get Out
Getting Out Again I was really looking forward to meeting my friends for the first time in 14 months; however,…
Read More » - Best Life
The Cochlear Implant Journey – A Year On
Background It would be an understatement to say it has been life changing for me to have a perception of…
Read More » - Personal Stories
What the SSRA Means to Me
Nowhere to Go When I was first diagnosed with superficial siderosis (SS), there wasn’t much information around. It was a…
Read More » - Advocacy
Getting Involved & Raising Awareness
Getting involved in events to raise awareness of superficial siderosis.
Read More » - Personal Stories
It’s OK not to be OK
It was RUOK day, but I was not OK. Yesterday was RUOK day, but I wasn’t. If I had been…
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