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.

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.

My journey to diagnosis with POEMS syndrome was quite a lengthy one. I had so many symptoms over 4 1/2 years but nothing linked them together. POEMS syndrome is very rare; most doctors never see a case in their lifetime.

I count my blessings that I have some incredibly good Doctors who found the missing piece of the jigsaw and that I'm still here to tell the tale.

Please support if this fundraiser if you are able to, if one person can be diagnosed sooner that would be absolutely fantastic, if the money raised can help find other treatments then that would be awesome.

I’m incredibly grateful to my family and friends for the support they have given me throughout the last four and a half years. I never cease to be amazed at how kind people really are. It’s really important that we live our lives and that we make memories with those we care about and love.

Thank you in anticipation, Chris xx