- Education
Empowering the Superficial Siderosis Community on Rare Disease Day
Today, February 28th, marks Rare Disease Day—a global movement dedicated to raising awareness and advocating for the millions of people…
Read More » - 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…
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