What Is Superficial Siderosis?

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. A rare neurodegenerative disorder so uncommon it’s often not recognized by the rare disease organizations tasked with supporting us. What is Superficial Siderosis? Superficial Siderosis is a slowly progressive chronic neurodegenerative disorder. It is not a genetic disease, and Superficial Siderosis isn't contagious. Its cause is often a past trauma, surgery, aneurysm, or some event that resulted in chronic subarachnoid bleeding. The body is designed to rid itself naturally of blood infiltration into the subarachnoid space, but in rare cases, this slow long-term bleeding overwhelms your system......

Superficial Siderosis News

Superficial Siderosis News

Worldwide Superficial Siderosis stories, news, events and announcements

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Ferriprox Chelation Study

Ferriprox Chelation Study

Two-year Observational Study Of Deferiprone In Superficial Siderosis

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Informational Downloads

Informational Downloads

Superficial Siderosis .pdf format information and research downloads

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superficial siderosis cardiac arrhythmia

Does Superficial Siderosis Contribute To Cardiac Arrhythmia?

When you think life has settled in it chooses to get in your face, passing by at a crazy pace. Before his pacemaker placement, Gary’s heart rate was consistently slowing, as low as 29 bpm, with swings upward topping 220+ bpm. Accompanied by more than his usual dizziness, and a burning sensation in his chest…

ssdi small details

When Small Details Equal Giant Victories

Superficial Siderosis Granted Compassionate Allowance Status The Superficial Siderosis community received validation this week as their status as rare disease sufferers’ was officially recognized by the U.S. Social Security Administration. On August 20, 2018, the U.S. Department of Social Security released a press release outlining their expansion of the compassionate allowance list of severe and incapacitating diseases that…

restless leg question

The Question Of Restless Leg Syndrome

  Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there a connection between SS and RLS? Or does the fact RLS affects 8% of the population¹ suggest it’s simple law-of-averages accounting for so many people now reporting problems? What is RLS? Restless legs syndrome (RLS)…

The Superficial Siderosis Patient 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 about and what will be done with the information that you provide. The disadvantages we fight include the geographic distance between our community members and finding interested researchers or healthcare industry partners. Superficial Siderosis patient member groups on social media have been our primary means of communication. Recent Facebook group discussions led to the realization our Superficial Siderosis community needs a patient registry accessible through a web-based platform. After some consideration, it seemed the most cost-effective way to a Superficial Siderosis patient registry was to build the first one ourselves. This website takes advantage of internet security protocol, registration requirements, and restricted member login for access to profile and survey areas. Our personal information will be stored the same as yours. No information will ever be offered for sale. No identifying information will ever be disclosed without your express consent.

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