Livingwithss

Description

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.


MY BLOGS

LATEST ARTICLES ( 97 )

  • My Last Music Festival

    Last Music Festival

    Download Festival Prior to 2017 I was a very outgoing person and had attended Download Festival nearly every year since I had turned 20. Read more

    Posted on 05 May 2021 HEALTH
  • How To Block The Agony Of Brain Zaps

    The Slow Movement of Pandemic Care Having a rare condition can make it hard to get information as it is, but during the Covid-19 pandemic, it has stepped up a... Read more

    Posted on 12 April 2021 HEALTH
  • The Long Journey Here

    Finding care for superficial siderosis patients moves in slow motion—the time spent searching for a diagnosis—next, the search for information. Read more

    Posted on 24 March 2021 HEALTH
  • Will Neglecting Your Hearing Loss Really Hurt Your Cognitive Ability?

    Hearing loss is now one of the leading causes of disability worldwide, affecting more than six percent of the population. The impact on people’s lives is... Read more

    Posted on 17 March 2021 HEALTH
  • The Harsh Reality Of Falling Down

    Harsh Reality Falling Down

    Falling Let’s face it, those of us with Superficial Siderosis have trouble navigating. Steps, floors, rugs, rugged terrain, small hills, clumps of dirt, or... Read more

    Posted on 21 February 2021 HEALTH
  • After Diagnosis

    After Diagnosis

    Fours Years On To say it has been a rollercoaster of events would be an understatement. With twists and turns coming so often, I have finally found a bit of... Read more

    Posted on 02 February 2021 HEALTH
  • A Sneak Peek Into The COVID-19 Immunization Journey

    Sneak Peek Into COVID-19 Immunization Journey

    Trusting Science It’s natural to be reluctant to roll up your sleeve for something as new as the coronavirus vaccine. For those who also face the dual concern o... Read more

    Posted on 10 January 2021 HEALTH
  • The Painful Farewell To The Sounds Of Life

    Painful Farewell Sounds Life

    The Progression of Hearing Loss in Superficial Siderosis Hearing loss is one of the most common symptoms of Superficial Siderosis. Read more

    Posted on 05 January 2021 HEALTH
  • The Struggle Of Dual Neurological Conditions

    Struggle Dual Neurological Conditions

    Superficial Siderosis and Hydrocephalus Having superficial siderosis is one thing, but sometimes like me, it’s possible to have other disabling neurological... Read more

    Posted on 12 December 2020 HEALTH
  • 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 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
  • 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
  • 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