POEMS Syndrome is a rare neurological condition that affects 200-300 people in the UK. Although it presents in similar way to other nerve conditions it is unique in being driven by the same kind of cells found in a blood cancer called myeloma. Once recognised, it can be therefore be successfully treated with many of the same drugs that are used for myeloma, and with good responses patients can expect to see an ongoing neurological recovery.

As most know, I was diagnosed with a Solitary Femoral Plasmacytoma which caused a plasma cell disorder - POEMs in September 2024. It effected the nerves in my legs and I am having to learn to walk again. I spent 13weeks in hospital and had my femur fitted with a rod and pinned, followed by chemotherapy and radiotherapy. In Summer 25 I went back into hospital following an infection. I’ve under gone and still continue physiotherapy to improve my movement and with determination I am improving. I was lucky in that I was diagnosed quickly by UCLH who are the national specialist centre. The team have been amazing and got me through the most challenging times I’ve ever faced.

We are looking to raise money to fund this service in order to continue and expand this work. Funds would be used for:

-Development of a database review of clinical data, leading to ongoing research and guidelines

- Dedicated clinical research fellows to manage to manage the POEMS service and carry out research

- Education programme both for patients and doctors to improve awareness of POEMS Syndrome, prevent delays in diagnosis and improve treatment and management for patients in the UK and internationally.