Superficial Siderosis. Subpial Siderosis. Infratentorial Superficial Siderosis. No matter how your doctor officially labels your diagnosis odds are no one has the slightest idea of the battle you are about to face.

Due to the severe nature of the disease, in 2018 the Social Security Administration added superficial siderosis to the Compassionate Allowance list of conditions that allows for the fast-tracking of disability claims

What is Superficial Siderosis?
Explaining the process requires some big and complicated words. Not big as in real size or number of letters in a word but in the sense of consequences. Yes, it progresses slowly for those diagnosed, but what if those early years are spent searching for an explanation of random symptoms? Imagine living through a decade of endless testing and frustration with no answers.

Superficial siderosis develops when toxic iron molecules are curbed by a protein called ferritin. Together this forms a layer of hemosiderin that settles in various areas of the brain and spinal cord that are in contact with cerebrospinal fluid. Long-term exposure is toxic to the tissue underneath resulting in hearing loss, imbalance, dizziness, weakness, numbness and bowel/bladder dysfunction. Although easily identified by ​magnetic resonance imaging ​(MRI), superficial siderosis is often confused for other progressive neurological conditions such as multiple sclerosis, Parkinson’s, or multiple system atrophy.



  • Retrain Your Brain with Vestibular Therapy

    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 from the... Read more

    Posted on 26 January 2023 HEALTH
  • REM Sleep Behavior Disorder

    Sleep Behavior Disorder

    What is RBD REM Sleep Behavior Disorder (RBD) is a severe secondary condition to neurological disorders in which the pontine areas of the brain controlling REM... Read more

    Posted on 25 January 2023 HEALTH
  • What a Year! 2022 Summary

    What Year! 2022 Summary

    Overview 2022 has been a busy year on the awareness raising front, which is a brilliant feat for such a rare disease. With more awareness, there will likely be... Read more

    Posted on 31 December 2022 HEALTH
  • A Rare Reunion

    Rare Reunion

    From Tweetup to Meetup Rhys and Deb, 2019 It had been over three years since I’d first met my friend Deb, who also has superficial siderosis. We met on Twitter... Read more

    Posted on 28 December 2022 HEALTH
  • What the SSRA Means to Me

    What SSRA Means

    Nowhere to Go When I was first diagnosed with superficial siderosis (SS), there wasn’t much information around. It was a case of rummaging through Google to fin... Read more

    Posted on 06 November 2022 HEALTH
  • 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 asked, I would have fallen to pieces. I did, anyway. On Tuesday, I had... Read more

    Posted on 09 September 2022 HEALTH
  • The Daily Frustrations of Superficial Siderosis

    Daily Frustrations Superficial Siderosis

    Making Plans Living with superficial siderosis is very frustrating, to say the least; it’s hard to plan anything due to the spontaneity of the symptoms, which... Read more

    Posted on 01 September 2022 HEALTH
  • Running on Empty

    Running Empty

    Superficial siderosis can be excruciatingly draining on everyone it touches. Sometimes it feels like we’re running on empty. It’s been a while since I’ve... Read more

    Posted on 08 July 2022 HEALTH
  • U.K. Neurological Alliances Unite

    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 a co-production (co-pro) group was established... Read more

    Posted on 27 June 2022 HEALTH
  • Community Forum Launches

    Community Forum Launches

    Welcome to the Superficial Siderosis Discussion Boards While the popularity of social media hass shown us a way to connect globally with those diagnosed with... Read more

    Posted on 22 June 2022 HEALTH
  • Wellbeing Therapy

    Wellbeing Therapy

    Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your... Read more

    Posted on 08 May 2022 HEALTH
  • Is a Digital Subtraction Myelography the Answer?

    Digital Subtraction Myelography Answer?

    Finding Your Needle Leak in the Haystack While a traditional MRI may show the location of a pseudomeningocele, a Dynamic CT myelogram remains the suggested... Read more

    Posted on 30 March 2022 HEALTH
  • Cochlear Implant Assessment Day

    Cochlear Implant Assessment

    The Cochlear Implant Question It’s back to London once again, this time for a full day of tests to see if I’m a suitable candidate to receive a cochlear implant... Read more

    Posted on 26 March 2022 HEALTH
  • Preparing for a Medical Appointment

    Preparing Medical Appointment

    It’s always a good idea to prepare for your appointment, so you can get all the information you need out of it. Leaving with unanswered questions can cause... Read more

    Posted on 11 March 2022 HEALTH
  • Reclaiming Your Independence, A Guide to Managing Hearing Loss

    Reclaiming Your Independence, Guide Managing Hearing Loss

    Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to... Read more

    Posted on 06 March 2022 HEALTH
  • Improving Your Fitness

    Specially written for LivingWithSS.comRollene Janelle, Guest Author Superficial siderosis (SS) is considered a rare neurodegenerative condition. Read more

    Posted on 02 March 2022 HEALTH
  • UCL Presents A Virtual Live Panel Event

    Presents Virtual Live Panel Event

    Living with superficial siderosis – the patient’s journey Infratentorial superficial siderosis (iSS) is more commonly known as superficial siderosis of the... Read more

    Posted on 07 February 2022 HEALTH
  • The Cochlear Implant Experience

    Cochlear Implant Experience

    Is A Cochlear Implant Right For You? Hearing loss affects 95% of superficial siderosis patients. Specialized hearing aids designed to help word recognition in... Read more

    Posted on 23 November 2021 HEALTH
  • The Road To Neurosurgery

    The Neurosurgery Repair Process In this piece, I’m going to share my personal experience of when I was admitted for neurosurgery to have a pseudomeningocele... Read more

    Posted on 11 November 2021 HEALTH
  • Exercises for Balance and Mobility

    Exercises Balance Mobility

    Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to... Read more

    Posted on 13 October 2021 HEALTH