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 7 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 rare disease is most definitely more life changing than you can imagine. '
The above is a poem which I submitted for the Genetic Alliance UK Rare Disease Day anthology. I am delighted to be included on page 20:
We NEED a cure and understanding of the cause, NOW 🙏
DYK: Scleroderma Unit Royal Free Hospital Royal Free London NHS Foundation Trust will be celebrating it's 30 year anniversary 17th May 2025 - eternal Thanks to Prof Chris Denton and team 😇⭐
Please donate to medical research to identify a cure and the cause of scleroderma, at the Scleroderma Unit Royal Free Hospital Royal Free London NHS Foundation Trust. Your donation will be used for medical research purposes only. Thank You 🙏
There are several ways as to how you can donate:
Via the Royal Free Charity :
Donation Page : https://royalfreecharity.org/donate
Scroll down to tick box 'your donation will be used where the need is greatest. However please tick this box if you would like to donate to a specific appeal or fund'. Click on the box to reveal 'a where would you like to give to' drop down menu. Scroll down to the Scleroderma and Raynaud's research option and click on this option.
Leave a gift in your Will :
The Royal Free Charity provides a free Will writing service ☝️
Just Giving Page :
Thank You 🙏
#SclerodermaFreeWorld #RaynaudsFreeWorld
#Research #Scleroderma #SystemicSclerosis
#Raynauds #Autoimmune #RareDisease
#NoCure #UnknownCause
#Life changing #ConnectiveTissue
Delighted to be included here:
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