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.



  • What’s Your Fall Risk?

    If you’re living with a gait and balance impairment, this is a familiar scenario. You’re innocently walking, minding your own business, and out of nowhere an... Read more

    Posted on 12 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
  • 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
  • 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 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
  • 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