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 ( 136 )

  • The Struggle With High Cost Medications

    Life with a rare disease or chronic illness has a way of taking over; juggling responsibilities, appointments, kids, and family. Take your meds on time. Eat... Read more

    Posted on 19 January 2018 HEALTH

  • Becoming A Better Friend To The Chronically Ill

    Becoming Better Friend Chronically

    If you are fighting a battle with a rare disease or are chronically ill, you are familiar with the challenges you face daily. Sometimes the same can’t be said o... Read more

    Posted on 14 January 2018 HEALTH

  • Becoming A Better Friend To The Chronically Ill

    Becoming Better Friend Chronically

    If you are fighting a battle with a rare disease or are chronically ill, you are familiar with the challenges you face daily. Sometimes the same can’t be said o... Read more

    Posted on 14 January 2018 HEALTH

  • Neurology Roadtrip

    We made our trip to Gary’s regular neurology appointment this week seeking answers to his headaches. Since he left the private healthcare sector last January an... Read more

    Posted on 12 January 2018 HEALTH

  • The Results Are In

    “Does Deferiprone provide a clinical benefit to the superficial siderosis patient?” If you remember, the April 2017 edition of The Neurology Journal, gave us... Read more

    Posted on 05 January 2018 HEALTH

  • A New Chapter For 2018

    Chapter 2018

    Honestly, I’m glad to see the back of 2017 Have you ever felt like the proverbial herd of turtles trying to run through peanut butter? Gary’s health gave our... Read more

    Posted on 01 January 2018 HEALTH

  • Five/Two Diet Plan Update

    Five/Two Plan Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed this the Five/Two... Read more

    Posted on 26 December 2017 HEALTH

  • Life Expectancy of Superficial Siderosis Patients

    Life expectancy on the surface a straightforward question It’s human nature to wonder “How long will I live?” A life-changing illness and thoughts like this... Read more

    Posted on 22 December 2017 HEALTH

  • Dialing Down The Pain

    Gary always hurts. It’s a fact-of-life he can’t run from; from his head to his toes, 365 days a year, 24-hrs a day. Pain. The days his pain scale reads 3 or 4,... Read more

    Posted on 20 December 2017 HEALTH

  • Welcome Accessibility

    Welcome Accessibility

    If you’re a return visitor to our website, you may have noticed the crazy color and layout changes that have been happening multiple times a day. Read more

    Posted on 16 December 2017 HEALTH

  • Thread of Depression

    Thread Depression

    Have you ever wondered which SS symptom is the most commonly shared and often the most incapacitating? Sensorineural Hearing Loss, Ataxia, and Myelopathy are al... Read more

    Posted on 10 December 2017 HEALTH

  • Is My Ferriprox Working?

    Ferriprox Working?

    The Big Question First of all, we know the mind of Superficial Siderosis patients is full of questions. But if you’re one of the few who uses Deferiprone you... Read more

    Posted on 04 December 2017 HEALTH

  • Staying Woke:

    Staying Woke:

    Get Woke I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandkids ages range from a first-year college... Read more

    Posted on 30 November 2017 HEALTH

  • Hearing Loss And The Movies

    Hearing Loss Movies

    Adapting To A Life With Hearing Loss Technology has made settling in on the couch watching a good movie inviting for those with hearing loss. But honestly,... Read more

    Posted on 27 November 2017 HEALTH

  • The Neuropathy Chronicles 2.0

    Neuropathy Chronicles

    Peripheral Neuropathy Symptoms Hello Pain, My Old Friend You might remember from one of our e… Continue reading....The post The Neuropathy Chronicles 2.0... Read more

    Posted on 22 November 2017 HEALTH

  • Railroad Spike: Chronic Headache Pain

    Railroad Spike: Chronic Headache Pain

    Living With Chronic Headache Pain Chronic headache pain has been in our lives for years. Our Superfi… Continue reading....The post Railroad Spike: Chronic... Read more

    Posted on 22 November 2017 HEALTH