Personal Stories
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Getting Involved & Raising Awareness
Getting involved in events to raise awareness of superficial siderosis.
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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…
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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…
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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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Deborah Hatch
Rare Disease UK “You’re quite a celebrity around here,” my neurologist says, as mum and I meet him in London…
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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…
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Captain Robert Cameron
A Nostalgic Look Back: Celebrating Success Stories for SS MonthOriginally published in April 2018, we’re taking a moment during Superficial…
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When Neurology Has No Answers: My Journey Through the Maze of Superficial Siderosis
A Nostalgic Look Back: Celebrating Success Stories for SS Month We’re taking a moment during Superficial Siderosis Month to revisit…
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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…
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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…
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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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The Daily Frustrations of Superficial Siderosis
Making Plans Living with superficial siderosis is very frustrating, to say the least; it’s hard to plan anything due to…
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Running on Empty
Superficial siderosis can be excruciatingly draining on everyone it touches. Sometimes it feels like we’re running on empty. It’s been…
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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,…
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My Last Music Festival
Download Festival Prior to 2017 I was a very outgoing person and had attended Download Festival nearly every year since…
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The Struggle Of Dual Neurological Conditions
Superficial Siderosis and Hydrocephalus Having superficial siderosis is one thing, but sometimes like me, it’s possible to have other disabling…
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