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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
Exercises for Balance and Mobility
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and…
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Patient Stories
- Personal Stories
Julianne’s Superficial Siderosis Odyssey
Originally published in June 2021, we’re revisiting some of the most inspiring personal journeys gracing our pages. Today, we’re peeking…
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 Year of Struggle and Change
A year of struggle and change; that’s what it has been for Gary, our family, and myself. Emerging from the…
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 » - 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
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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