- Headache
Knocking Out The Brain Zaps
Did they work the first-time round? It had been tough for me to tell if the first course of nerve…
Read More » - Research
Research Day
Taking Part in Superficial Siderosis Research Waking up for the Big Day I woke up to a bad headache, probably…
Read More » - Headache
How To Block The Agony Of Brain Zaps
The Slow Movement of Pandemic Care Having a rare condition can make it hard to get information as it is,…
Read More » - Treatment Journey
The Long Journey Here | Neurosurgery
Finding care for superficial siderosis patients moves in slow motion—the time spent searching for a diagnosis—next, searching for information. In…
Read More » - Hearing
Will Neglecting Your Hearing Loss Really Hurt Your Cognitive Ability?
Hearing loss is now one of the leading causes of disability worldwide, affecting more than six percent of the population.…
Read More » - Mobility and Balance
The Harsh Reality Of Falling Down
Falling Let’s face it, those of us with Superficial Siderosis have trouble navigating. Steps, floors, rugs, rugged terrain, small hills,…
Read More » - Advocacy
After Diagnosis
Fours Years On To say it has been a rollercoaster of events would be an understatement. With twists and turns…
Read More » - Education
A Sneak Peek Into The COVID-19 Immunization Journey
Trusting Science It’s natural to be reluctant to roll up your sleeve for something as new as the coronavirus vaccine.…
Read More » - Hearing
The Painful Farewell To The Sounds Of Life
The Progression of Hearing Loss in Superficial Siderosis Hearing loss is one of the most common symptoms of Superficial Siderosis.…
Read More » - Research
Is Neuroprotection The Answer?
Can The Progression Of Superficial Siderosis Be Slowed? The holy grail of any rare disorder is discovering the cure. With…
Read More » - Physical Therapy and Exercise
Retraining The Brain
Neuro physiotherapy Around August 2015, I noticed my balance was starting to deteriorate. Since then, it has gradually gotten worse,…
Read More » - Depression
The Effect of a Rare Disease on Mental Health
Superficial Siderosis 2015-2016 Getting a diagnosis was the first step. After about a year of health deterioration, multiple hospital admissions…
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