Education
Information on how you can navigate through treatments, therapies, doctors and life with superficial siderosis
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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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2023 In Summary
A Mixed Bag Like most years, 2023 has been full of up and downs. Awareness raising is going strong, and…
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Morrello Para-Triathlon 2023
Putting the ‘TRY’ in Triathlon Back in 2020 when I first start having neuro-physiotherapy at the Morrello Clinic, Allison my…
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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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Retrain Your Brain with Vestibular Therapy
Vestibular therapy exercises are designed to improve the vestibular system's function by challenging and retraining the brain to process information…
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REM Sleep Behavior Disorder
What is RBD REM Sleep Behavior Disorder (RBD) is a severe secondary condition to neurological disorders in which the pontine…
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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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Wellbeing Therapy
Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond…
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Preparing for a Medical Appointment
It’s always a good idea to prepare for your appointment, so you can get all the information you need out…
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Reclaiming Your Independence, A Guide to Managing Hearing Loss
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best…
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