The Pathway To Healing

Our healing pathway

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; These are the real enemies you confront because of superficial siderosis. Yes, free iron wreaks havoc, but this mix of symptoms will rob you of your independence and your wellbeing. The damage at the…

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The Superficial Siderosis Patient Registry

Superficial Siderosis Patient Directory

  Your Superficial Siderosis community advocates, the Living With Superficial Siderosis website and The Silent Bleed -Your Superficial Siderosis Charity have joined together in a grassroots effort to support the launch of a patient-powered registry. You are being asked to take part. Before you agree to participate in this volunteer effort, it is important that you understand what this registry is…

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The Results Are In

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“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…

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Superficial Siderosis Webinar Transcript

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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…

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Superficial Siderosis Webinar

What causes Superficial Siderosis

Superficial Siderosis Webinar In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology explains just precisely what Superficial Siderosis is. Listen to an explanation of the known causes, how your doctor will make the diagnoses and what your treatment options are in this easy to understand 30-minute presentation. To view a written transcript of this webinar…

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