- 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…
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 » - Advocacy
2023 In Summary
A Mixed Bag Like most years, 2023 has been full of up and downs. Awareness raising is going strong, and…
Read More » - Physical Therapy and Exercise
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…
Read More » - 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 » - Bladder/Bowel
Coping with Urinary Incontinence
Urinary incontinence is a medical condition characterized by the involuntary loss of urine. While we refer to incontinence as a…
Read More » - Personal Stories
Captain Robert Cameron
A Nostalgic Look Back: Celebrating Success Stories for SS MonthOriginally published in April 2018, we’re taking a moment during Superficial…
Read More » - Personal Stories
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…
Read More » - Perspective
The Psychological Journey with Superficial Siderosis
Living with Superficial Siderosis (SS) is not just a physical ordeal; it’s an emotional and psychological journey that affects not…
Read More » - Mobility and Balance
The Balance Struggle of Neurodegenerative Disorders
Understanding the intricate relationship between vision, balance, and neurodegenerative disorders like Superficial Siderosis is essential.
Read More » - Loss of Smell
Embrace the Crunch: A Journey into Anosmia and Superficial Siderosis
The Unseen Influence of Smell on Taste Most of us take for granted how our sense of smell enriches our…
Read More » - Advocacy
The Neurological Alliance Petition Hand-in
Department of Health and Social Care Members of The Neurological Alliance Co Production Group (a group of people from across…
Read More » - Cognition and Personality
Sundowning and Cognitive Decline in Superficial Siderosis
Managing the symptoms of sundowning and cognitive decline in late-stage SS can be challenging, but there are strategies that caregivers…
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