‘Now that the weather is better, you must be better’
This may make me sound similar to a ‘junkie’, but at this time, I was desperate for my body to respond positively to these disease modifying drugs, to prevent the final option which I was facing, and was actually on the waiting list for – a stem cell transplant.
I already have a small patch of skin on my left knee which has been diagnosed as ‘Bowen’s’ disease, and which was responsive to topical treatment, but has subsequently reappeared.
I focussed on telangiectasia on DAY 27 Scleroderma Awareness Month 2016 Campaign.
|Day 27 June Scleroderma Awareness Month 2016 - Telangiectasia|
I also make sure that my body is well covered by clothing, including my arms, which have developed ‘sun spots’ over the years, and I certainly do not want these becoming bigger due to further sun exposure.
I am not proud to be able to liken myself to a character from The Simpsons, (the guy with the long hair, baseball cap and glasses), with my ‘I have to avoid the sun’ look, and with my inner ‘Bond Girl’ having absconded in embarrassment.
This routine having been in place for over a decade and contributing to my current 95% skin reversal to healthy normal skin.
Over the more so recent years, overheating, (yes, you have read that correctly – overheating), has become a huge physical challenge for me, in the summer months.
My internal thermometer goes into overdrive, with a very small window of prior warning.
The medical scleroderma genius Prof Chris Denton tells me, that this is due to an alteration in the skin make up further to scleroderma symptoms, with an alteration to the sweat glands.
I very much hope to raise sufficient funds to sponsor a research student for investigating this further, along with the painful enigma which is calcinosis.
This comprises of intense shivering and muscle spasm with my body turning rigid, and takes a while to regulate.
Clearly, this is a most unpleasant experience and extremely frightening, and so prevention of such is key and recommended.
This makes for wearing ‘feminine skimpy girly’ summer clothing a ‘no go’, when combined with the skin cancer risk element.
Living in Fuerteventura certainly eased my chronic pain and flexibility. However, everywhere was air conditioned, which although my internal sweating production appreciated this, my fingers and toes would be blue.
|Hottest day of 2013, wearing Ugg boots and gloves to prevent Raynaud's attack|
|Hottest day of 2013 wearing Ugg boots and Gloves to prevent Raynaud's attack|
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