POEMS syndrome

POEMS syndrome is a rare condition caused by the body producing abnormal plasma cells (a type of blood cell which produces antibodies to fight off infections). This blood disorder affects multiple organs in the body. It is named after the five common features of the syndrome described below.

Polyneuropathy - nerve damage leading to weakness, numbness and pain in the arms and legs

Organomegaly - an enlarged spleen and/or liver

Endocrinopathy - hormonal problems

Monoclonal plasma cell disorder - an overproduction of abnormal plasma cells which lead to other, multi-system effects

Skin changes - darkening of skin, red spots on the body, hair growth, nail changes, peripheral swelling.

UCLH runs a national POEMS clinic for diagnosis, support and treatment of patients suspected or actual POEMS syndrome. A team of specialist clinicians runs the clinic with support from specialist nurses, neurophysiology, ISO-accredited diagnostic laboratories and a neurorehabilitation service with physiotherapy, orthotics, occupational therapy and psychologists.

UCLH currently manages one of the largest reported group of POEMS patients in Europe, with approximately 150 people attending the clinic.

We conduct research into POEMS syndrome to understand more about UK POEMS patients, mechanisms of disease and how we treat the condition most effectively. We are currently running a study looking into the inflammation molecules produced in POEMS syndrome and, in particular, how they cause nerve damage.