My Skin Is Cured From Scleroderma - Nicola Whitehill
|'My Skin Is Cured From Scleroderma' 30.11.16|
Almost 18 years to the day, from having first attended the Scleroderma Unit at The Royal Free Hospital in London, I am exhilarated to have been told on 30th November 2016, by the world scleroderma expert, Prof Chris Denton, that ‘your skin is now cured from scleroderma’.
My body had turned to stone, literally.
This was accompanied by swollen joints and weak muscles, making any physical exertion, including standing, a huge feat.
My fingers and toes were constantly blue with a minimum of 4 digital ulcers at any one time.
Along with a level of tiredness that I had never experienced before (even after a week holidaying in Ibiza post A-levels, did not make the slightest level of comparison).
Following extensive and numerous medical tests, the good news was that minimal internal organ involvement was evident.
However, the progression and aggressiveness of the fibrosis and lack of elasticity of my skin and connective tissue placed me in the ‘diffuse systemic sclerosis critical patient’ list.
An urgent medical treatment plan was drawn up with numerous iv cyclophosphamide infusions scheduled, which if ineffective, I would have a stem cell transplant.
This feeling was comforted by the knowledge that, I was now under the medical expertise of global leaders in their field, whose dedication and commitment to improving the scleroderma patient landscape, invoked huge hope in me, that a cure would be discovered within my lifetime.
And most of all, they would ‘pull out all of the stops’ to do everything they could to help me, and of extreme importance to me, help me to realise my childhood dream to be a barrister.
At the same time I was taking mycophenolate mofetil (mmf) 2g / day.
By easter, my skin symptoms gradually eased, taking me out of the stem cell transplant list.
By the end of June, I was back on my sofa, experiencing a relapse with my symptoms, mainly lethargy, intense musculo-skeletal pain (tin man) and neuralgic pain.
Six months later, I relocated to my birth town of Southport, with the management of my symptoms to a tolerable level, now taking over as my full time job.
Due to my Raynaud’s sensitivity, I have found that the prevention of attacks is far less painful, than having an episode.
This makes for a ‘home bird’ all year round.
Again, words are difficult when trying to describe a Raynaud’s attack.
‘Slamming your hand in the car door’, I would suggest, is an acceptable description, however, the pain can not be articulated.
I do not want to appear to be morbid, just honest, about my reality at that time.
I am also extremely grateful to my local medical team here in Southport, Dr Sykes and the rheumatology team, as well as, Dr Bontea and the dermatology team at Ormskirk hospital, and of course my dentist, Andrew Booth and hygienist Louise.
I have stabalised my gastro-intestinal symptoms by altering my diet and including daily smoothies and fresh juices for maximum super food nutrition.
However, this combination of my current unmet clinical needs, most certainly shows that scleroderma is more than skin deep, causing devastation to the vascular and soft tissue / connective tissue processes along the way.
Click here, to view my article 'Living the dream, being your own Scleroderma, Raynaud's, Autoimmune Rare Disease Advocate'.
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice