‘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|
The lump on my forehead which still remains questionable as to whether it is calcinosis or the makings of a basal cell carcinoma (BCC) also loves the sun by becoming bigger and redder upon sun exposure.
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|
My work / hobby will continue to be inspired by you.
An edited version of this article was published here, in my Column with Scleroderma News.
Planning for the Future, Click here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
|Chat Magazine May 2019|
|James Carver, myself, Prof Chris Denton|
I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.