Most / ALL scleroderma patients will experience Raynaud’s, the narrowing of blood vessels, as a secondary symptom.
Raynaud’s can sometimes present as the diagnosing feature of scleroderma, however, this was not the case for me.
Tight puffy fingers and intense lethargy along with difficulty in swallowing were my initial symptoms. See more, here
Wearing so many clothes- I have more layers than an onion, with my inner Bond Girl, vanished into oblivion!
I see colour changes in various body parts should I experience the smallest change in temperature, including my nose, ears, hands, and toes.
I have a selection of hats, scarves, balaclavas and gloves in an attempt to minimise any potential Raynaud’s trigger by way of the weather.
I wear gloves and Ugg boots all year round.
Thereby, avoiding any triggers, by remaining in a cosy, expensive centrally heated environment. This is my reality.
Even indoors, I can experience a Raynaud’s attack by going into a different room which may be a slightly lower temperature.
Which they did, but unfortunately, most places were air conditioned, which makes for a Raynaud’s playground!
I am not able to hold a glass which has ice in it, although, I do make an exception for a champagne glass filled with Laurent Perrier Rose champagne!
I discussed Raynaud’s prevalence in more detail, Day 7
Believe me, the experience makes you want to make sure, that you do not make yourself susceptible to ulcer heaven / personal nightmare. See Day 9
The treatment options target symptom suppression only, as the cause still remains a scientific mystery.
Although, stress is recognised as an inducer of Raynaud’s.
|The hottest day of 2013, wearing Ugg boots and gloves to minimise Raynaud's attack - Nicola Whitehill|
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.