A poem by Nicola Whitehill
In 1997 aged 24, my life as I had known it, was to become no more.
I was told that I had a rare disease, to which there is no cure, little did I know, as to what was about to lie in store.
My symptoms of swollen stiff fingers along with very tight skin, difficulty with swallowing, all prompted diagnostic tests to begin.
A specialised blood test, confirmed diffuse systemic sclerosis, also known as scleroderma, along with Raynaud’s phenomenon, with little medical understanding of cause and cure, at best.
A life expectancy of fifteen months was predicted, combined with immunosuppressant and steroids as a temporary fixative.
The following year, I transferred my medical care to the world expert doctors at the Royal Free Hospital in London, and to this expert centre I attribute, my still being here.
Those initial years were touch and go, with frequent chemotherapy drips, back and forth to the hospital, like a yo-yo.
Thankfully my name was removed from the stem cell transplant list, but by now I was unable to make a fist.
My body had become the real life tin man, and my life into the world of disability began.
Years of immunosuppressant, chemotherapy cocktails were my norm, in an attempt to calm my autoimmune storm.
On 1st March 2004, I achieved my dream of becoming a barrister, and, after seven years of chemotherapy, I said no more.
Unfortunately, the disease has caused irreversible damage, making it a full time job to symptom manage.
Prevention of a Raynaud’s episode is key, preventing gangrene, antibiotics and amputation, ultimately.
Living with a degenerative rare disease without a cure, is character building for sure.
Medical research is my only hope to improve what lies ahead, and, I actually do most of my #SclerodermaFreeWorld awareness hobby, whilst in my bed.
And although I am grateful to be ‘semi fixed’, each day is a relentless challenge, with new symptoms added to the mix.
Rare disease patients must unite, as we all have several commonalities within our plight.
Early diagnosis, medical expert centres, access to innovative medicines and medical research, to highlight just a few, to the rare disease patient, these are nothing new.
I have now spent over half of my life living with this body and dream hijacker, with the best medical team and hope as my elixir.
Living with a degenerative rare disease without a cure, is most definitely more life changing than you can imagine.
