- Treatment Journey
Superficial Siderosis and CSF Leak
Superficial Siderosis and CSF Leak – An Intertwining Complication Superficial siderosis and CSF (cerebrospinal fluid) leak go hand in hand.…
Read More » - 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 » - Personal Stories
Remembering What it is Like to Get Out
Getting Out Again I was really looking forward to meeting my friends for the first time in 14 months; however,…
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 » - Education
Do I Still Have An Active Bleed?
Arriving at the Hospital The day had finally arrived; it was time to venture to the hospital in Cardiff for…
Read More » - Personal Stories
My Last Music Festival
Download Festival Prior to 2017 I was a very outgoing person and had attended Download Festival nearly every year since…
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 » - 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 » - 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 » - Personal Stories
The Struggle Of Dual Neurological Conditions
Superficial Siderosis and Hydrocephalus Having superficial siderosis is one thing, but sometimes like me, it’s possible to have other disabling…
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…
Read More » - Advocacy
Finding A New Purpose
Losing the ability to carry on with something your life revolved around is extremely tough to take, as well as…
Read More » - Personal Stories
A Day In My Life
My Life With Superficial Siderosis Rhys Holmes In 2016 I was diagnosed with Superficial Siderosis, a rare degenerative neurological condition…
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