But it didn’t prevent the Director of the Rubin Institute for Advanced Orthopaedics and Co-Director of the International Centre for Limb Lengthening at Baltimore’s Sinai Hospital, from giving hope to sufferers of the rare bone disease when they gathered last month (July) for the annual conference of the US Melorheostosis Conference.

Dr Paley is an expert in non-surgical limb treatment and deformity correction – and arrived at the conference like a breath of fresh air for sufferers of a condition which is known to respond poorly to conventional invasive surgical techniques.

This uncertainty – fuelled by reports that some patients have experienced a post-operative increase in the condition’s rate of growth – brought hope and encouragement to the audience of Melo sufferers who joined 12 of the world’s foremost scientists and medical experts for the two-day event at the St Louis University in Missouri.

“Needless to say, the biggest problem facing the medical profession as we try to combat this disease, is a lack of experience,” explained Dr Paley. “There’s no definitive centre of excellence or acknowledged base of knowledge, and until there is, it will continue to be difficult to coordinate developments and research.

“What we do know from our limited experience is that treating Melo needs different approaches depending on the age of the patient. In adults, alleviating pain is usually the most pressing driver, whereas in children, the emphasis tends, naturally, to be placed on treating deformity.”

Such treatment demands great care and sensitivity, and complications such as a loss of circulation can compound the challenges if deformity correction takes place too quickly.

This gradual treatment is rendered all the more frustrating by the inclination of the Melo disease to become a bigger problem as children grow and develop; a process during which gradual attrition also takes place.

Osteotomy – or bone cutting and lenghthening - takes advantage of bone’s ability to tolerate 1mm per day of distracture without scarring. Although such a propensity gives Dr Paley and his team opportunities to make significant headway, for the patient it can mean up to 10 months in the grip of external fixators.

Timing is also key – a child treated too soon may have to ensure a further round of treatment again at the end of the growth phase. Even where treatment takes place before the end of the growth phase, bracing is then needed until growth comes to an end, in order to deal with the soft tissue’s memory.

“Given how little we currently know about Melo, our treatment seems to be the best available,” added Dr Paley. “We know that traditional invasive surgery has its own raft of potential problems – not least of which is the high possibility that, once operated upon, deformed bones can fuse again but in an even more uncomfortable or painful position.

“For Melo patients, osteotomy is truly cutting edge medicine – and yet there are many unanswered questions. On the basis of what we have learned so far – and taking into account what we hope to learn once more Melo patients come forward for treatment – it may, however, become as close to salvation as sufferers can currently get.”