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 ( 78 )

  • Meet Dr. Michael Levy

    Meet Michael Levy

    The Superficial Siderosis Research Alliance is pleased to announce Michael Levy MD, PhD as the SSRA Board Chief Medical Advisor. Dr. Read more

    Posted on 03 August 2019 HEALTH
  • Radio Silence

    Radio Silence

    You may have noticed the silence of late. Life becomes busy and complicated. Sometimes you need to step back for a minute. Social media, vegetable, and chicken... Read more

    Posted on 12 July 2019 HEALTH
  • Patience

    If there is a single lesson our superficial siderosis community should be annoyingly familiar with, forward progress never happens overnight. We always seem to... Read more

    Posted on 16 April 2019 HEALTH
  • The Pathway To Healing

    Pathway Healing

    What if research could identify a way to give your body a fighting chance? Kick-start the path to healing? Ataxia, sensorineural hearing loss, and myelopathy;... Read more

    Posted on 27 March 2019 HEALTH
  • Making Our Voice Heard

    Making Voice Heard

    Superficial siderosis is an ultra-rare condition with a small patient population. Our community knows all too well how difficult the journey to a diagnosis and... Read more

    Posted on 09 March 2019 HEALTH
  • Rare Disease Week 2019 on Capitol Hill

    Rare Disease Week 2019 Capitol Hill

    Living with Superficial Siderosis will be heading to Capitol Hill in Washington DC this weekend to join with fellow rare disease advocates, patients, and... Read more

    Posted on 21 February 2019 HEALTH
  • Your Daily Medications

    Imagine living a life that revolves around medication. I know many of you can relate. Try keeping track of 200 pills a week with nine different daily dosage... Read more

    Posted on 27 January 2019 HEALTH
  • Is It Time To Visit A Neuropyscologist?

    Time Visit Neuropyscologist?

    Your brain is a complex system that controls your body, guides your thinking, and filters emotional response. When something like superficial siderosis damages... Read more

    Posted on 24 October 2018 HEALTH
  • Superficial Siderosis Standard Of Care

    In the United States, there is usually a national standard of care for a particular diagnosis. A documented clinical guideline for your physician to follow. Read more

    Posted on 10 October 2018 HEALTH
  • Does Superficial Siderosis Contribute To Cardiac Arrhythmia?

    When you think life has settled in it chooses to get in your face, passing by at a crazy pace. Before his pacemaker placement, Gary’s heart rate was consistentl... Read more

    Posted on 15 September 2018 HEALTH
  • When Small Details Equal Giant Victories

    Superficial Siderosis Granted Compassionate Allowance Status The Superficial Siderosis community received validation this week as their status as rare disease... Read more

    Posted on 21 August 2018 HEALTH
  • Countdown To The Last MRI

    Our Chelation Journey This past week has seemed like a bad episode of Mission Impossible. We found ourselves desperately racing the clock trying to schedule wha... Read more

    Posted on 01 August 2018 HEALTH
  • The Question Of Restless Leg Syndrome

    Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there a connection between SS and RLS? Read more

    Posted on 22 July 2018 HEALTH
  • Camping with a Chronic Illness

    No, I’m sorry we can’t.  It’s become our standard answer to most invitations now. Our niece sent a text last month. Hey, we’re going sky diving do you guys... Read more

    Posted on 16 July 2018 HEALTH
  • When You Are the RARE in Rare Disease

    When RARE Rare Disease

    Superficial Siderosis. Subpial Siderosis. Infratentorial Superficial Siderosis. No matter how your doctor officially labels your diagnosis odds are no one has... Read more

    Posted on 04 July 2018 HEALTH
  • Summertime Neurology Blues

    Summertime Neurology Blues

    We hit the road last week for another trek to see the neurologist. We usually enjoy these long rides up into the heart of Arkansas, but it seems we can’t... Read more

    Posted on 20 June 2018 HEALTH
  • The Superficial Siderosis Patient Registry

    Your Superficial Siderosis community advocates, the Living With Superficial Siderosis website and The Silent Bleed -Your Superficial Siderosis Charity have... Read more

    Posted on 10 June 2018 HEALTH
  • Cookie And Privacy Policy

    Living With Superficial Siderosis  invites you to read our Cookie and Privacy policy We use an opt-in email system for notification of new articles when they ar... Read more

    Posted on 24 May 2018 HEALTH
  • Our Superficial Siderosis Community: Meet Rhys Holmes

    Meet Rhys Holmes Rhys Holmes loves music. A 28-year-old Welshman, he spent time in the music program at Glamorgan University. An accomplished lead guitarist... Read more

    Posted on 22 May 2018 HEALTH
  • Decoding The Superficial Siderosis MRI

    Decoding Superficial Siderosis

    2016 MRI Superficial Siderosis " data-medium-file="https://i1.wp.com/livingwithss.com/dir/wp-content/uploads/2017/12/Sense-Head-8.jpg?fit=300%2C300&ssl;=1"... Read more

    Posted on 18 May 2018 HEALTH