Patients with the chronic condition, lymphoedema, often know more about it than their doctors, an expert has said.

Lymphoedema causes swelling in parts of the body, usually the arms and legs. It is caused by an impairment in the lymphatic system, an important part of the body's immune system. Around 15,000 people in Ireland are affected and there is no cure.

People can be born with the condition (primary lymphoedema) or they can develop it (secondary lymphoedema) as a result of damage to their lymphatic system due to, for example, infections, cancer or radiotherapy. Around 1,200 new cases are diagnosed in Ireland every year as a result of cancer treatment.

According to Prof Peter Mortimer of St George's Hospital in London, the condition can be life-threatening because of the risk of serious infection. Prof Mortimer is one of the world's leading lymphoedema experts and he was speaking at a recent open day in Cork organised by the patient support group, Lymphoedema Ireland.

He told those attending that this is one of the few conditions ‘where patients are likely to know more than the doctors'.

"If lymphoedema is diagnosed, and that's a big if, and patients are referred to a surgeon, they are usually not interested. Lymphoedema is not on the radar. There is just not enough education at medical schools. Patients have to keep educating their doctors. All they can do is diplomatically suggest what needs to be done, give doctors leaflets or the details of websites where they can get more information," Prof Mortimer said.

Speaking at the event, a number of people with the condition described how they had been waiting years for a diagnosis, while others said they had incurred huge costs for treatment which they are unable to recover.

Also speaking at the event, Lymphoedema Ireland chairperson, Nina Murray, pointed out that educating the medical profession about the condition, and advocating for better services for those affected, are two of the group's main objectives.

"We want to work with healthcare professionals to raise awareness about the condition and to ensure that there is a better understanding of the treatment options. If the medical community is better informed about lymphoedema, we are confident that some of the problems our members encounter around diagnosis will be addressed," she said.

She added that this would also hopefully help to address the ‘treatment deficit' for lymphoedema.

"Many parts of Ireland have poor or non-existent lymphoedema services, despite evidence that the provision of such services provides long-term benefits in terms of healthcare costs," she added.

For more information on the condition, click here