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

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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 bleeding to prevent their condition from worsening. 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, Massachusetts General) 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 stall the symptoms of Superficial Siderosis.

 

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.

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What are the usual symptoms of Superficial Siderosis and what other side effects are there?

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Many thanks to Dave Hill's informative website and blog from which this list has been taken.

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Side effects can include:

 

• Hearing loss

• Ataxia (impaired balance)

• Dementia

• Loss of bladder & bowel control

• Anosmia (loss of ability to smell)

• Sensory signs (failure of the senses)

• Anisocoria (one pupil of the eye is larger than the other)

• Bilateral sciatica (pain down the backs of both legs from the sciatica nerve in the lower spine)

• Headaches and/or migraines

• Change of sleeping patterns (irregular or interrupted sleep, or may be the opposite – long periods of sound sleep)

• Loss of taste

• Muscle cramps

• Double vision and other vision complications

• Cranial nerve palsies

• Imaginary pains, smells, tastes and sounds

• Failure of the senses

• Double sciatica

• Mini strokes

• Seizures

• Speech difficulty

• Nystagmus (involuntary eye movements)

• Numbness and pain in parts of the body, especially feet

• Swallowing difficulties

• Failure to feel pain in the teeth

• Parkinson’s type leg and hand wobbles

• Inability to control emotions – anger, sorrow, etc.

• Intolerance and uncertainty to heat and cold; may feel roasting hot, but are actually cold

• Failure of sexual organs – inability to arouse an erection, or no feeling of satisfaction for females

• Oscillopsia - a visual disturbance in which objects in the visual field appear to oscillate - the severity of the effect may range from a mild blurring to rapid and periodic jumping)

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If you think this list is not complete or if you'd like to add your own symptoms to it, please get in touch. Thank you.

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