I have previously, likened my experience to being an Olympic athlete.
I know that I will have to prepare for battening down my hatches, and a return to my eskimo-style outfits.
At the start of spring 2018, I wrote about the Pandora's Box and my skin cancer experience.
I also wrote about my ongoing dental issues due to my diagnosis, 'If we only had more research'.
A dry mouth symptom can lead to mouth infections and tooth abscess.
Day 28 Scleroderma Awareness Month 2016.
I have difficulty holding a tooth brush due to the physical limitation in my hands and fingers.
This is excruciatingly painful, causing dental involvement requiring tooth extractions and increased susceptibility to infection, aided by a continual dry mouth.
However, on the bigger picture scale, I know that this is a small irrelevance, compared to some of the organ devastation which other patients experience.
Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.
Coming Up: OCTOBER is RAYNAUD'S AWARENESS MONTH
Living the dream, scleroderma style.
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
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 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
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