Welcome to Living With Superficial Siderosis. We are the informational hub of the Superficial Siderosis Research Alliance. We provide the latest information for patients, caregivers, and anyone who wants to learn about Superficial siderosis. The Superficial Siderosis Research Alliance (SSRA) is a 501(c)(3) U.S. based nonprofit whose mission is patient advocacy, education, and funding Superficial siderosis medical research.
What is Superficial Siderosis?
Infratentorial superficial siderosis, commonly identified as superficial siderosis, is a disabling degenerative disorder affecting the brain and spinal cord. Persistent or recurring long-term bleeding (hemorrhage) into the subarachnoid space in the brain results in a toxic build-up of hemosiderin (an important component of iron delivery) on the surface of the brain and pia mater from circulating cerebrospinal fluid. Patients will present with one or more of the classic triad of symptoms: hearing loss, movement abnormalities (ataxia), and motor difficulties due to suspected spinal cord injury (myelopathy) with pyramidal signs. Proper recognition and timely early diagnosis of superficial siderosis allow for early care planning.