Superficial Siderosis
- 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 » - 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 » - Hearing
The Cochlear Implant Journey
Prognosis Superficial siderosis can damage the cranial nerves which could prevent a cochlear implant from working. It wasn’t an easy…
Read More » - Personal Stories
What the SSRA Means to Me
Nowhere to Go When I was first diagnosed with superficial siderosis (SS), there wasn’t much information around. It was a…
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 » - News
Community Forum Launches
Welcome to the Superficial Siderosis Discussion Boards While the popularity of social media has shown us a way to connect…
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Superficial Siderosis
Infratentorial Superficial Siderosis of the Central Nervous System Explaining the process requires some big and complicated words. Not big as…
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…
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What is Superficial Siderosis
Superficial Siderosis (Infratentorial superficial siderosis (iSS)) is a disorder that develops over time when long-term bleeding into your central nervous…
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…
Read More » - Therapeutic Alternatives
Combating Neural Damage
The holy grail of neurodegenerative disease research is discovering a pathway to healing—reversing neural damage, either through regeneration or surgical…
Read More » - Advocacy
The Decade that Was
The eve of a new year is a time for reflection. When I look back on our lives at the…
Read More » - Chelation Therapy
The Decision To Choose Chelation Therapy
Researching a rare disease on your own is tricky. Superficial siderosis is a serious diagnosis and most of the early…
Read More » Superficial Siderosis Research Alliance
The SSRA Story Meet Our Founders, Kyle and Sue Dempsey Sue and Kyle Dempsey There is no greater motivating force…
Read More »- Swallow
Small Victories
I wrote an earlier piece on livingwithss.com detailing Gary’s intermittent swallowing problem. The Danger Of Dysphagia outlines some serious risks…
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