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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being rare

When you are the RARE in Rare Disease

  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…

sspr landing

The Superficial Siderosis Patient Registry

  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…

spotlight profile

Our Superficial Siderosis Community: Meet Rhys Holmes

Meet Rhys Holmes   Rhys Holmes loves music. A 28-year-old Welshman, he spent time in the music program at Glamorgan University. An accomplished lead guitarist and background vocalist, Rhys followed his dream of hitting the road. He spent time traveling through London in a van with fellow bandmate Nick Byrne while working for a supermarket.…

MRI Superficial Siderosis5

Decoding The Superficial Siderosis MRI

Tracking Your Hemosiderin   There has been a definite increase in people diagnosed with superficial siderosis. The improvements in neuroimaging have resulted in advanced iron sensitive 2-D and 3-D MRI techniques. Thankfully you can now be diagnosed in vivo and, if you’re fortunate, early enough to do something. Researchers have now identified three branches of superficial…

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.