Living with Superficial Siderosis

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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.


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What is Superficial Siderosis?

Toxic free-iron molecules are curbed by a protein called ferritin, which forms into a layer of hemosiderin in various areas of the brain, brainstem, spinal cord, and cranial nerves. Long-term exposure is toxic to the tissue underneath, resulting in hearing loss, imbalance, dizziness, weakness, numbness, and bowel/bladder dysfunction. Although easily identified by ​magnetic resonance imaging ​(MRI), superficial siderosis is often confused for other progressive neurological conditions such as multiple sclerosis, Parkinson’s, or multiple system atrophy.

Explaining the process requires some big and complicated words. Not big as in real size or number of letters in a word but in the sense of consequences. Yes, it progresses slowly for a good percentage of sufferers, but what if those early years are spent searching for an explanation of random symptoms? Imagine living through a decade of endless testing and frustration with no answers.

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

Studies always mention the classic triad of symptoms: AtaxiaSensorineural Hearing Loss, and Myelopathy. Still, if you look carefully into the problems most often reported by Superficial siderosis patients, you find the clinical symptom list is a little more complicated than the classic trio.

Is There New Information?

Recently published studies have documented many clinical symptoms now found with Superficial siderosis. Most are symptoms in one of the three parent categories. A few, DepressionCraniospinal Hypotension, and Neurological Reserve, aren’t direct clinical symptoms but have an obvious connection. No one, to our knowledge, has ever experienced all of them. Our glossary continues ever-evolving, and expanding as we review new information.

How Does Superficial Siderosis Develop?

As individual blood cells travel through your subarachnoid space, they begin to rupture through a process called Hemolysis. The bursting of cell walls creates a heme overload that triggers the Bergman glia and Microglial cells to fight back by producing the enzyme heme oxygenase-1. This enzyme breaks down the heme and results in the release of free iron molecules, carbon dioxide, and biliverdin. Your body converts biliverdin into bilirubin and routes it out of your body through your liver. Glial cells manufacture ferritin, which binds to the free-iron.

Eventually, the ferritin-bound iron molecules attach themselves by forming a layer of hemosiderin on the subpial layer that covers the nooks and crannies of your brain, brain stem, spinal cord, and surrounding tissue. Gravity comes into play. Laying down or sleeping positions the cerebellum to become a prime target. Walking or sitting upright makes your spine at risk for the remainder of the day. Cranial nerve sections that run through your cerebrospinal fluid also become covered in hemosiderin. This long-term exposure to free-iron molecules is toxic. This may result in neural damage, cerebellar atrophy, and neurodegeneration.

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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.

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