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.
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