Tag: Superficial Siderosis

brain alliance fiona

Living with a rare neurodegenerative disease

  The Australian Brain Alliance www.brainalliance.org.au August 1, 2018     In April 2015, Fiona Parkinson went from an ordinary Mum of three boys who worked part time and worked on the family’s hobby farm, to having to walk with a stick. It took seven months to be diagnosed with Superficial Siderosis, a rare neurodegenerative…

MRI Superficial Siderosis5

Decoding The Superficial Siderosis MRI

Tracking Your Hemosiderin   There has been a definite increase in people diagnosed with superficial siderosis. The improvements in neuroimaging have resulted in advanced iron sensitive 2-D and 3-D MRI techniques. Thankfully you can now be diagnosed in vivo and, if you’re fortunate, early enough to do something. Researchers have now identified three branches of superficial…

common thread

The Common Thread Searching For The Unexplained

Diagnosis of superficial siderosis is rare. It’s so unique in fact if you searched for information on one of the national or international rare disease databases until the last few years it wasn’t listed.  We should be glad so few will face a diagnosis of superficial siderosis, but you can’t help but wonder. Is there…

life expectancy

Life Expectancy of Superficial Siderosis Patients

Life expectancy, on the surface a straightforward question. It’s human nature to wonder “How long will I live?” A life-changing illness and thoughts like this can consume you. Superficial Siderosis Life Expectancy, two words and it becomes intensely personal. The early impressions were dark; no cure, the damage is irreversible and fatal. That word fatal is a definite…

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