Story
When I struggled to run playing football in January 2025, I never imagined that 12 months later I would be disabled and receiving regular chemotherapy injections.
It began as a tight right calf, not uncommon for a 41-year-old playing 5-a-side! I rested for a few weeks and then tried playing tennis, same issue, I simply couldn't run, my legs wouldn’t function properly.
The next six months involved an array of people trying to diagnose what was wrong. Sports physios, osteopaths, GP’s, A&E doctors and consultants all tried and throughout that time my condition only worsened.
By the time I saw a neurologist privately in July I needed a crutch to stand, I couldn’t move my toes, I had numbness, tingling and swelling in my feet and my balance was poor. The neurologist said I had lower limb neuropathy and after an Electromyography (EMG) confirmed nerve damage, I was admitted to the Queen Elizabeth Hospital in Birmingham.
I’m incredibly grateful that my hospital consultant had heard of POEMS syndrome (Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal plasma cell disorder, Skin Changes) because he immediately requested a vascular endothelial growth factor (VEGF) blood test. I was treated for CIDP whilst we waited for the result and when it returned showing my VEGF levels were sky high, my consultant believed I had POEMS.
POEMS is incredibly rare. It effects 1-in-1 million people and in the UK just over 170 people have received the diagnosis in the last 20 years. It’s so uncommon that it isn’t formally recognised by the NHS. To confirm my diagnosis, I was admitted to the National Hospital for Neurology and Neurosurgery in London for a week of intensive tests, including a bone marrow biopsy.
During this time, my condition continued to deteriorate. My legs and feet worsened, and my hands began to weaken. Thankfully, the biopsy confirmed POEMS and I was able to begin treatment back in Birmingham before further damage was done.
Although POEMS isn’t a blood cancer, the treatment is often similar. I began chemotherapy injections in October, and within two weeks I noticed real improvements. Strength returned to my upper legs and I became more mobile. However, nerve damage in my lower legs and feet could take years to recover.
It’s been an incredibly difficult year not only for my wife and kids but also my wider family and friends who watched my health decline. I’m grateful to INUK for connecting me with peer support and free counselling sessions through Rare Minds which have been invaluable in helping me cope with such a rare condition.
As I write this in June, I am currently back in hospital recovering from my stem cell transplant. I was so happy I could travel to attend my brother's wedding abroad as that looked unlikely just a few months ago.
I am delighted that we now have this targeted fundraising campaign setup to fund research into this condition – thanks to the POEMS team at UCLH and INUK for making this possible.
Whilst the fundraising is important, raising awareness of this condition is equally vital and the more people are aware of POEMS the better. So if you can support with a donation I would be incredibly grateful but sharing this story can also make a significant impact.
Thank you,
Bobs x
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.