Living with Superficial Siderosis

Share:

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.


Due to the severe nature of the disease, in 2018, the U.S. Social Security Administration added superficial siderosis to the Compassionate Allowance list of conditions that allows for the fast-tracking of disability claims.


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.

Latest

Our Philosophy

We believe sharing our Superficial Siderosis experiences is necessary because when patients and caregivers share real-world data, worldwide collaboration becomes possible. More importantly, change becomes possible. Our goal is to bring the Superficial Siderosis patient community together with mutually beneficial goals. Support research funding to aid in the discovery of new therapies, share ideas, educate, and advocate for our community members.

We encourage clinicians, researchers, and academics to submit questionnaires to the Superficial Siderosis Patient Registry. No one understands how the symptoms of Superficial Siderosis change the lives of both the patient and caregivers better than our community.

SSRA Misson

To seek, raise, and provide funding in support of medical research for the benefit of the world community affected by the neurodegenerative disorder, Superficial Siderosis.

SSRA Gear Shop

Support the SSRA mission

ssra official gear shop

Comments are closed.