New hope for sisters trapped in their bodies

Often misdiagnosed as Parkinson's or Huntington's disease, scientists discovered it was in fact a new condition and named it neuroferritinopathy, as it is caused by a build-up of iron in the brain.

A trial at Cambridge University will test if an existing drug can be repurposed to draw out the iron, and halt, reverse or possibly even "cure" some patients.

Investigations have also taken place to see if they could have shared common ancestry with Fletcher Christian, known for leading the mutiny on the Bounty in April 1789, given he was also from the region, but that evidence remains unclear.

Now, nearly 25 years since the condition was recognised, neurology professor Patrick Chinnery from the University of Cambridge is about to start a year-long trial of an existing drug, deferiprone, which he hopes will be able to "pull out the iron from the brain" and halt the disease in its tracks.

After patients have had symptoms for 10 years, the excess iron is "clearly causing damage to the brain itself and the supporting tissue has been destroyed," Prof Chinnery explains.

"Drug repurposing trials are an increasingly effective way of taking treatments that have already been approved and applying them to new conditions and diseases," says Dr Catriona Crombie, from LifeArc.