Livingwithss

Description

Life after a diagnosis of Superficial Siderosis
Superficial Siderosis is a chronic neurodegenerative condition caused by an accumulation of hemosiderin on the surface of the brain and spinal cord. Prior to the advent of Magnetic Resonance Imaging (MRI) it was only diagnosable on the autopsy table. SS is so extremely rare it will present in approximately 1 patient out of a million.


MY BLOGS

LATEST ARTICLES ( 62 )

  • 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
  • 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