- Personal Stories
Finding Harmony Through Challenge: Mikko Pettinen’s Story
A Life Shaped by Music In the heart of Helsinki, where jazz fills the air and creativity thrives, trumpeter and…
Read More » - 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 » - 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 » - 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 » - 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 » - 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…
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 » - autonomic dysfunction
Regulating Body Temperature
Feeling Hot and Cold Here are a few reasons people with superficial siderosis may experience these temperature-related sensations. Neurodegenerative disorders…
Read More » - Therapeutic Alternatives
Exploring Curcumin
The Role of Hemosiderin Hemosiderin is an iron-storage protein that forms when ferritin, a primary iron-storage protein, becomes saturated with…
Read More » - Physical Therapy and Exercise
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…
Read More » - Education
REM Sleep Behavior Disorder
What is RBD REM Sleep Behavior Disorder (RBD) is a severe secondary condition to neurological disorders in which the pontine…
Read More » - Personal Stories
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…
Read More » - Surgery
Is Digital Subtraction Myelography the Answer?
Finding Your Needle Leak in the Haystack While a traditional MRI may show the location of a pseudomeningocele, a Dynamic…
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