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 an early peek at what the study findings might be in the final revision of Two-year Observational Study Of Deferiprone In Superficial Siderosis¹. The study was released this past December 28th, and the results have been published. This blog post is our cliff note version of the study, keeping in…

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A New Chapter For 2018

Living with superficial siderosis website

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 family a few frightening moments the first half of 2017. Reality hits when you’re waiting alone in an ER, 200 miles from home. One step forward five steps back, so we’re ready to move forward and welcome a new chapter for 2018. I hope you’ve had a chance…

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The Neuropathy Chronicles

Pain of neuropathy

Neuropathy: Burn Me, Stab Me, Shoot Me We touched on our search for some relief from peripheral neuropathy in our August blog post, QUARTERLY NEUROLOGY FOLLOW-UP. You’ll find an explanation of the type of neuropathic pain connected with Superficial Siderosis in MANAGING NEUROPATHIC PAIN. Sharp jolting stabs of burning pain across one or both feet was making it impossible to sleep. A short trial run of the prescription medication Lyrica was discontinued due to some…

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Superficial Siderosis Webinar Transcript

superficial siderosis webinar transcript

Superficial Siderosis Webinar Transcript Presented by Dr. Michael Levy   To view the recorded webinar you may watch here Download a copy of the transcript and slides  here Click on the individual slide to view larger   Hi, my name is Dr. Michael Levy. I’m an assistant professor at Johns Hopkins University in Baltimore and a neurologist. I see patients with Superficial Siderosis of the nervous system. This webinar was really a joint effort with…

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Managing Neuropathic Pain

Hello, Switchboard I’ve Been Disconnected   One of the better explanations I found during our search for ways to manage neuropathic pain associated with Superficial Siderosis was a quote from Dr. Corey W. Hunter¹. “Typically, a healthy nerve will only send a signal when it is stimulated, e.g., a nerve in the hand that senses temperature will stay quiet until the hand gets near the flame on the stove. However, an injured nerve is like…

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Benefits of Green Tea

Green tea for memory

  Green tea has enjoyed a such a surge in popularity that more than a few people are skeptical. Every healthy living blog is touting the benefits of green tea for everything from cardiovascular health, diabetes, and weight loss. Yes, that sure will raise an eyebrow or two, but when you do some research, you may find yourself changing your mind. One of the more worrying signs of Superficial Siderosis is cognitive impairment. 20% of…

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