- 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 » - Advocacy
What a Year! 2022 Summary
Overview 2022 has been a busy year on the awareness raising front, which is a brilliant feat for such a…
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A Rare Reunion
From Tweetup to Meetup Rhys and Deb, 2019 It had been over three years since I’d first met my friend…
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
It’s OK not to be OK
It was RUOK day, but I was not OK. Yesterday was RUOK day, but I wasn’t. If I had been…
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The Daily Frustrations of Superficial Siderosis
Making Plans Living with superficial siderosis is very frustrating, to say the least; it’s hard to plan anything due to…
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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…
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U.K. Neurological Alliances Unite
‘Together for the 1 in 6’ Each of the four countries in the U.K. has its own Neurological Alliance, and…
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Community Forum Launches
Welcome to the Superficial Siderosis Discussion Boards While the popularity of social media has shown us a way to connect…
Read More » - Best Life
Wellbeing Therapy
Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond…
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…
Read More » - Hearing
Cochlear Implant Assessment Day
The Cochlear Implant Question It’s back to London once again, this time for a full day of tests to see…
Read More » - Education
Preparing for a Medical Appointment
It’s always a good idea to prepare for your appointment, so you can get all the information you need out…
Read More » - Best Life
Reclaiming Your Independence, A Guide to Managing Hearing Loss
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best…
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Improving Your Fitness
Specially written for LivingWithSS.comRollene Janelle, Guest Author Superficial siderosis (SS) is considered a rare neurodegenerative condition. The prevalence of superficial…
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UCL Presents A Virtual Live Panel Event
Living with superficial siderosis – the patient’s journey Infratentorial superficial siderosis (iSS) is more commonly known as superficial siderosis of…
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