What is Superficial Siderosis?

A survivor's condition

The neurological condition Superficial Siderosis is incredibly rare - perhaps only one in ten million people have it.

Simply put, it is a condition which can follow more than one brain bleed and as the blood is broken down by the body, it leaves iron deposits on the brain, cranial nerves and spinal cord. This causes, among other symptoms, disabling disruption to balance, problems with sight and hearing loss as well as other conditions. It is a degenerative illness.

 

But we live in exciting times

 

Until recently, there was no hope for sufferers, other than surgically stemming any bleed to prevent their condition from worsening.  In fact, before the advent of MRI imaging, it was only ever diagnosed in post mortem examinations. In the past few years, however, following trials in America (by Dr Levy, Johns Hopkins, Baltimore) there is some hope. A drug, Deferiprone (brand name Ferriprox) usually used for removing excess iron from the body in people with beta-thalassemia major (a blood disorder), is now being used, with some positive results to help halt the symptoms of Superficial Siderosis and in some cases, has helped them to improve.

 

But this is a new area of neurology with no assurances that the drug will reverse the years of damage done by the bleed. And there is much to discuss: does diet affect the drug’s operation, should everyone receive it and what can there be done to help those who, because of other health problems, cannot take Ferriprox at this time?

 

We are committed to supporting research, helping those who need it to find the right doctor and receive treatment and share with you whatever related clinical news we can get our hands on.  But it's a community project - sharing your experiences means we can build a bigger network and work towards both cure and prevention.

 

For more information about symptoms and treatment, watch Dr Levy's informative webinar in the Ask A Specialist section and for symptoms, see here.

Get Social with us!

Our Facebook group is a kind and compassionate space for people with superficial siderosis to share the ups and downs of everyday life - search 'superficial siderosis - the silent bleed' and send a request to join.

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Registered as a Charity in England and Wales since 2016

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