Welcome to Living With Superficial Siderosis


What Is Superficial Siderosis?

Living With Superficial Siderosis
May 15, 2018


Superficial siderosis is a slowly progressive chronic neurodegenerative condition most often caused by past trauma or surgery that introduced bleeding into your central nervous system. The body is designed to rid itself naturally of blood infiltration into the central nervous system (CNS), but in rare cases, this longterm bleeding overwhelms your system. The result is an accumulation of hemosiderin on the pial surfaces of the brain and spinal cord.

Pathophysiology of Hemosiderin Deposition in Superficial Siderosis



(Illustration Copyright © 2018 Living With Superficial Siderosis)

These specialized cells attract this blood residue to the cerebellum, brain stem, cranial nerves, or spine. Hemosiderin (iron)  accumulates over time in these areas resulting in a neurotoxic effect on nerve function and cerebellar degeneration. Hearing loss, ataxia, and myelopathy related clinical symptoms mysteriously progress over time mimicking more widely recognized diseases. Superficial Siderosis is so rarely seen a correct diagnosis is often not found for years. Improved MRI technology and increased awareness have allowed radiologists to be often the first to report an accurate diagnosis.


There are limited  treatment choices for Superficial Siderosis


You can choose to live with the natural progression. Your physician may be able to locate an active bleed and perform a surgical repair to stop fresh blood infiltration. You can opt to try chelation drug therapy to remove the iron residue.

The only option with a guaranteed result is living with the natural progression. Depending on the severity and area your iron deposits are located the symptoms will continue to progress until your quality of life is affected. If you, or someone you know, has been diagnosed with superficial siderosis the search for answers is beyond frustrating. Learning to cope with this rare disease is a challenge. Finding a support network is essential.

Unexplained symptoms plagued Gary for many years


Ten years of searching for answers passed before a radiologist recognized the signs of superficial siderosis in September 2014. We invite you to follow our journey through this diagnosis as we share how we deal with the clinical symptoms, treatments, therapy options, research and general information we’ve collected along the way.



Updated June 18, 2018


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May 22, 2018

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.

In 1998, when Rhys was only eight, he went through surgery to remove a benign brain tumor. Other than fighting off a bout of meningitis post surgery he returned to school and happily resumed his passion as an avid footballer playing for his local club, Cardiff Soccer School of Excellence and Newport Schoolboys.

When symptoms returned in 2001 Rhys was diagnosed with hydrocephalus. His surgeon inserted a VP shunt which led to multiple surgeries during the next four years. His doctor informed his dad he would have to give up football. The news devastated Rhys so his father gave him a guitar hoping a new hobby would soften the blow.

rhysRhys found his way to an after-school music program run by drummer Bob Richards (Asia, AC/DC). In 2008 he entered Glamorgan University in Cardiff, but with repeated fights with bacterial meningitis and pneumonia continually interrupting his courses he left university to work full time. 2010 found him balancing a promotion to a supervisor with Asda Supermarket and playing gigs with the band.

While watching Lord Of The Rings with his girlfriend in mid-2013, he noticed he didn’t hear well. A visit to an audiologist revealed bilateral hearing loss and …… Read More



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