Our Philosophy And Our Purpose

We believe sharing our superficial siderosis experiences and symptom history is necessary. Why? Because when patients and caregivers share real-world data, collaboration on a worldwide scale becomes possible. New treatments become possible. Most importantly, change becomes possible. Our goal is to bring Superficial Siderosis patients and caregivers together for a higher purpose: speeding up the pace of research, discovering new...

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Support Superficial Siderosis Research

Support Research

Superficial Siderosis fundraising will soon go to the next level. Progress is often slow but in the near future tax-deductible...

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Taking a break

Radio Silence

You may have noticed the silence of late. Life becomes busy and complicated. Sometimes you need to step back for...

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Tissue Donation Project

What if researchers could identify a way to give your body a fighting chance? Research takes a very long time,...

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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 condition is so uncommon it’s often not recognized by the rare disease organizations tasked with supporting us.

What is Superficial Siderosis?

These toxic iron molecules are curbed by a protein called ferritin which together form a layer of hemosiderin around the brain, brainstem, spinal cord and optic 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.

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

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.

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 system through your liver.

Glial cells now manufacture ferritin to capture and store the free-iron. For some unknown reason, the ferritin becomes overwhelmed. Unable to contain all of the free-iron the excess is left floating in spinal fluid throughout the subarachnoid space surrounding your brain and spinal cord.

Eventually, the iron molecules attach themselves by forming a layer of hemosiderin on the subpial layer that covers the nooks and crannies of your brain and spinal cord. 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 the remainder of the day. Cranial nerve sections that run through your spinal fluid also become covered in hemosiderin.

This long-term exposure to free-iron molecules and hemosiderin is toxic. The result is neural damage, cerebellar atrophy, and neurodegeneration.

What symptoms are Superficial Siderosis related?

It’s frustrating trying to find out if a problem you’re having is related to your Superficial Siderosis or it stems from an unrelated health issue. Many are battling multiple conditions or non-related disease. Care must be taken not to fall into the trap of blaming Superficial Siderosis for everything.

Historically, studies always list the classic triad symptoms: Ataxia, Sensorineural Hearing Loss, and Myelopathy. These three symptom categories are easy to present in a neat bundle, but if you look carefully into the problems most often reported by Superficial Siderosis diagnosees, you find the clinical symptom list is a little more complicated than the classic trio.

Our first posting in 2015 was to list 30 problems thought to be Superficial Siderosis related. Over the past three years, this list has evolved into a searchable glossary. A few of the original symptoms, such as tremors and dental pain are temporarily gone, still awaiting documentation.

Is there new information?

A recent explosion of published studies has yielded 32 documented clinical symptoms found to affect a person with Superficial Siderosis. Most track to one of the three parent categories. A few, such as Depression, Craniospinal Hypotension, and Neurological Reserve aren’t direct clinical symptoms but have an obvious connection. No one, to my knowledge, has experienced all of them. The glossary continues to be a work-in-progress, ever-evolving and expanding as we review new information.

The Superficial Siderosis Patient Registry

While Living With Superficial Siderosis played a technical role in the creation of your new patient registry it would never have come to exist without the creative input from members of the Superficial Siderosis community. It really does belong to everyone. We’re just temporary caretakers until it can become a self-sustaining resource. If you haven’t had a chance to visit the website please do. We’re not looking to intrude in your lives, any information you chose to divulge is voluntary. We just want to show the world we exist. superficialsiderosispatientregistry.org