Livingwithss

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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.


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LATEST ARTICLES ( 148 )

  • The COVID-19 Vaccine Question

    Is The Vaccine Safe for A Superficial Siderosis Patient? Based on the data I’ve reviewed in the Pfizer filing, it appears that the RNA COVID vaccine they are... Read more

    Posted on 10 December 2020 HEALTH

  • Facing Down Coronavirus

    Hello Lockdown Bubble This has been a banner year for anxiety with the many underlying conditions Superficial Siderosis patients face daily. The lack of early... Read more

    Posted on 24 November 2020 HEALTH

  • Is Neuroprotection The Answer?

    Neuroprotection Answer?

    Can The Progression Of Superficial Siderosis Be Slowed? The holy grail of any rare disorder is discovering the cure. With Superficial Siderosis, so far,... Read more

    Posted on 21 November 2020 HEALTH

  • Retraining The Brain

    Retraining Brain

    Neuro physiotherapy Around August 2015, I noticed my balance was starting to deteriorate. Since then, it has gradually gotten worse, and at times my legs... Read more

    Posted on 03 November 2020 HEALTH

  • The Effect of a Rare Disease on Mental Health

    Effect Rare Disease Mental Health

    Superficial Siderosis 2015-2016 Getting a diagnosis was the first step. After about a year of health deterioration, multiple hospital admissions and tests, I wa... Read more

    Posted on 10 October 2020 HEALTH

  • Generic Deferiprone Set To Launch

    Generic Deferiprone Launch

    Taro Launches Specialty Generic Deferiprone Tablets, 500mg in the U.S. Taro Pharmaceutical Industries Ltd. announced the launch of a new specialty generic,... Read more

    Posted on 30 September 2020 HEALTH

  • Generic Chelation Medication Set To Launch

    Generic Chelation Medication Launch

    Taro Launches Specialty Generic Deferiprone Tablets, 500mg in the U.S. Taro Pharmaceutical Industries Ltd. announced the launch of a new specialty generic,... Read more

    Posted on 30 September 2020 HEALTH

  • Finding A New Purpose

    Finding Purpose

    Losing the ability to carry on with something your life revolved around is extremely tough to take, as well as being depressive. I have always been a huge... Read more

    Posted on 30 September 2020 HEALTH

  • Living In Upside Down World

    I thought we were ready. Very early in March, I had a conversation with two neurologists in Italy. They had both seen patients with Superficial siderosis, so... Read more

    Posted on 24 September 2020 HEALTH

  • A Day In My Life

    Life

    My Life With Superficial Siderosis Rhys Holmes In 2016 I was diagnosed with Superficial Siderosis, a rare degenerative neurological condition which is caused... Read more

    Posted on 23 September 2020 HEALTH

  • Changes

    Changes

    We should take a moment to discuss the elephant in the room; the cognitive, emotional, and mood changes that may accompany this disorder’s progression in... Read more

    Posted on 01 July 2020 HEALTH

  • One More Family

    More Family

    Our superficial siderosis Facebook family is a tightknit group. We share our problems and successes; we listen and learn from each other. Read more

    Posted on 08 May 2020 HEALTH

  • Combating Neural Damage

    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

    Posted on 29 April 2020 HEALTH

  • Meet Kelly Morgan

    Meet Kelly Morgan

    The SSRA is excited to introduce everyone to grant writing team member, Kelly Morgan. This has been a challenging few weeks for everyone in our country world bu... Read more

    Posted on 27 March 2020 HEALTH

  • Introducing Mass General Research Institute

    Introducing Mass General Research Institute

    Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new research home with the Mass General Research... Read more

    Posted on 21 February 2020 HEALTH

  • Embrace The Crunch

    Embrace Crunch

    Most of us never give much thought to how our sense of smell influences our sense of taste. The pleasure from appreciating the dimensions and nuance of flavors... Read more

    Posted on 04 February 2020 HEALTH

  • Believe in Hope 2019 Benefit

    Believe Hope 2019 Benefit

    We were thrilled to welcome just shy of 100 supporters to our 2019 Believe in Hope Benefit Dinner, December 7, 2019, at the Ingleside Hotel in Pewaukee... Read more

    Posted on 14 January 2020 HEALTH

  • Balancing Act

    Balancing

    Some days are better than others but you really start to worry about the future when you hear the unmistakable sound of someone bouncing off the wall and hittin... Read more

    Posted on 10 January 2020 HEALTH

  • The Decade That Was

    Decade That

    The eve of a new year is a time for reflection. When I look back on our lives at the end of 2009 I’m reminded of how carefree we felt. Read more

    Posted on 31 December 2019 HEALTH

  • Is Your Chelation Working?

    Your Chelation Working?

    When the two-year study on the efficacy of Deferiprone was published one finding stood out. Patient-participant physicians submitted MRIs during several stages... Read more

    Posted on 16 December 2019 HEALTH