The month of September always prompts a trip down the memory lane / abyss of September 1997, for me. For, it was at this time, aged 24, when I first heard those three words – ‘You have scleroderma’.
This was quite out of character for me as I had an insatiable zest for life.
Not only was I working as a medical representative for Bristol Myers Squibb, I was studying on a part time, distance learning basis for a postgraduate diploma in law, which would then lead me to pursue my childhood personal desire to be a barrister and professional advocate.
I had difficulty moving my fingers as they were stiff, as well as, I was having difficulty in gripping and making a full fist.
I also found it difficult to open my mouth wide and to swallow.
I wrote more about my initial symptoms on Day 4 of my June Scleroderma Awareness Campaign 2016
This was a totally new experience for me, as even in the winter, I would seldom be wearing thermal clothing, previously. I thought that the ‘thermal vest’ was something to look forward to, for when you reached late middle age!
It was during Autumn 1997 that my internal thermometer ‘tripped out’ and it still remains very demanding.
It took a few more months before the color changes would become visible in my fingers, presenting classic Raynaud’s symptoms, causing me to have to wear several layers even in the summer, which are then ‘bulked up’ in the winter. I wrote more about this, here
Having observed the change in my hands, combined with the tiredness and swallowing difficulties, I booked an appointment to see my GP medical doctor.
At the first consultation, the stiff puffy fingers were thought to be a form of arthritis, however, the blood test for arthritis returned a negative result. Which was a huge relief at the time, although, I knew that something was not right.
I was then required to give another blood test which was used for a specific autoantibody test, and bingo, this test returned a positive RNA Polymerase result, confirming a diffuse systemic sclerosis diagnosis.
I felt as though my whole world had ended and that the rug had been pulled out from under my feet.
There was no way that I was giving up on my law studies, I had already paid a fortune in tuition fees, afterall!
I returned to the hospital and commenced all of the different immunosuppressants and disease modifying agents available, with little improvement on the disease, but horrendous side effects and continual nausea.
Within 30 seconds of being in the consultation appointment, I knew that Dame Prof Black would do everything she could to help me, especially with me achieving my dream of being a barrister.
This co-operation from the medics most certainly makes for an improved patient experience, especially given that medical appointments / tests and the like, become the long term scleroderma patient’s full time job due to the multi disciplinary care required.
This has made me be dedicated to using the remainder of my life to improve the scleroderma, Raynaud's, Autoimmune Rare Disease patient experience. Read more, here
I take huge inspiration from the scleroderma global trail blazer and pioneer, Prof Denton, who I am eternally grateful to, for his medical expertise and helping me realise my dream of qualifying as a self employed barrister on 1st March 2004.
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