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 ( 148 )

  • The Danger Of Dysphagia

    Danger Dysphagia

    Most of us never consider the physical mechanics involved with eating or drinking. Open, chew, swallow, repeat. It turns out swallowing is a complicated... Read more

    Posted on 06 March 2018 HEALTH

  • The Danger Of Dysphagia

    Danger Dysphagia

    Most of us never consider the physical mechanics involved with eating or drinking. Open, chew, swallow, repeat. It turns out swallowing is a complicated... Read more

    Posted on 06 March 2018 HEALTH

  • New Technology With Hearing Loss

    Conversation for people with sensorineural hearing loss can feel like a never-ending game of hangman or charades. The clues are there, but the most critical... Read more

    Posted on 26 February 2018 HEALTH

  • New Technology With Hearing Loss

    Technology With Hearing Loss

    Searching For Clarity With Hearing Loss Conversation for people with sensorineural hearing loss can feel like a never-ending game of hangman or charades. Read more

    Posted on 26 February 2018 HEALTH

  • Taming Chronic Headache Pain

    Taming Chronic Headache Pain

    Gary woke this morning without a headache. The first pain-free moment in 12 very miserable years. Complete pain relief. I just want to read those words over... Read more

    Posted on 18 February 2018 HEALTH

  • Taming Chronic Headache Pain

    Taming Chronic Headache Pain

    Gary woke this morning without a headache. The first pain-free moment in 12 very miserable years. Complete pain relief. I just want to read those words over... Read more

    Posted on 18 February 2018 HEALTH

  • Vitamin D : Feed Your Brain

    Vitamin Feed Your Brain

    One detail Gary’s neuropsychologist recently brought up was his low vitamin D level. Everyone knows calcium and vitamin D help maintain healthy bones, but we ha... Read more

    Posted on 17 February 2018 HEALTH

  • Time to Rare Up

    Time Rare

     Every February individuals, patient organizations, NIH, medical researchers, hospitals and schools, universities and pharmaceutical companies representing ove... Read more

    Posted on 05 February 2018 HEALTH

  • Time to Rare Up

    Time Rare

    Every February individuals, patient organizations, NIH, medical researchers, hospitals and schools, universities and pharmaceutical companies representing over... Read more

    Posted on 05 February 2018 HEALTH

  • The Frustration Of Hearing Aid Down

    Frustration Hearing Down

    If hearing aids are your lifeline to the world, you get what a pain it is when one goes down. When both go down at the same time, it’s a… Continue reading.... Read more

    Posted on 26 January 2018 HEALTH

  • The Frustration Of Hearing Aid Down

    Frustration Hearing Down

    If hearing aids are your lifeline to the world, you get what a pain it is when one goes down. When both go down at the same time, it’s a tragedy. If this happen... Read more

    Posted on 26 January 2018 HEALTH

  • 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

  • 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