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 ( 78 )

  • 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

  • Inescapable Realities

    Inescapable Realities

    Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend searching for a... Read more

    Posted on 12 December 2019 HEALTH

  • Eye on Nystagmus

    Nystagmus

    It was late 2014. Gary and I were waiting in his new ophthalmologists exam room when I wondered why is it so many of the superficial siderosis related condition... Read more

    Posted on 06 December 2019 HEALTH

  • Meet David M.Dickson Jr.

    Meet David M.Dickson

    David M. Dickson Jr. has always enjoyed a zest for an active life. From neighborhood quarterback to surfing, fishing, weightlifting, and mountain biking this... Read more

    Posted on 03 December 2019 HEALTH

  • The Decision To Choose Chelation Therapy

    Decision Choose Chelation Therapy

    Researching a rare disease on your own is tricky. Superficial siderosis is a serious diagnosis and most of the early research papers we found scared us to death... Read more

    Posted on 22 November 2019 HEALTH

  • Living With Superficial Siderosis

    Living With Superficial Siderosis

    Saturday morning may have begun at our local community urgent care but soon turned into a run to the emergency room 65 miles further down the road. Read more

    Posted on 10 November 2019 HEALTH

  • Living With A Compromised Neurological Reserve

    Living With Compromised Neurological Reserve

    Metabolic stress is not a friend to the very young, elderly, or those who’ve been dealing with superficial siderosis for awhile. Read more

    Posted on 03 November 2019 HEALTH

  • A Tough Decision

    Tough Decision

    I remember when we heard our daughter had Superficial Siderosis several years ago, we did not know what to do or think. She had no symptoms, she had been in a... Read more

    Posted on 18 October 2019 HEALTH

  • Who Doesn’t Love a Freebie?

    Doesn’t Love Freebie?

    Everyone loves something free but too often there’s some kind of string attached. The item might be free but the cost of shipping and handling is outrageous,... Read more

    Posted on 11 October 2019 HEALTH

  • Introducing the Superficial Siderosis Research Alliance

    Introducing Superficial Siderosis Research Alliance

    Meet Kyle and Sue Dempsey There is no greater motivating force than the sense of urgency and concern you experience as parents when your child is diagnosed... Read more

    Posted on 09 October 2019 HEALTH

  • Small Victories

    I wrote an earlier piece on livingwithss.com detailing Gary’s intermittent swallowing problem. The Danger Of Dysphagia outlines some serious risks you may face... Read more

    Posted on 07 October 2019 HEALTH