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Olliers Disease (also known as Enchondromatosis) and Maffucci Syndrome are extremely rare diseases, Olliers occurs in one in every 100,000 people and Maffucci Syndrome is even rarer.

These conditions are characterised by multiple enchondromas which can affect any bone in the body, often it affects the long bones of the legs and the smaller bones in feet or hands.

Enchondromas are a type of benign bone tumour that originates from cartilage, as we grow the cartilage we have from birth should be turning into bone, with these conditions this does not happen and this can cause bones to look bent or crooked, tumours can become large and can cause weakness of the affected bone which can then lead to a fracture or can slow the growth in these areas.

With Maffucci Syndrome multiple enchondromas associated with soft tissue haemangiomas (benign tumours made up of blood vessels) can be found anywhere in the body.

Regular monitoring and examinations are required, surgery, therapy, ongoing pain and there is a chance of malignancy with both these conditions.

Living with these conditions can vary for each individual, once diagnosed individuals treatment can vary across the world; with no cures, limited funding for research, very little information, knowledge and support available to individuals and their families and no clear medical protocol in place these conditions can feel like there are no answers to the many questions.

 

The Association, the trust and its website content has been set up to provide information and guidance, we always advise you gain professional medical advice in relation to your condition.