The exceptions are a SINE scleroderma diagnosis, as well as, a limited scleroderma diagnosis, could present with little or no skin involvement.
Other tests, include those which I discussed, here
However, the growing lump on my forehead of the last three years has been a cause for concern and intrigue, further to me being prone to calcium lumps, which is now one of my long term scleroderma symptoms.
Although calcinosis is not as life threatening as organ damage, it can be extremely painful and contribute to organ damage.
It is my view that calcinosis is one of the biggest unmet needs of the stable scleroderma patient. I discussed in more detail about calcinosis, here.
Although, they are actually a lot different to a spot, as spots can be squeezed and these lumps can not, and which, I have hours of experience of squeezing and prodding, and the scars to show for it.
I was advised at this time, that a skin biopsy would be an option, in an attempt to identify more about the lump.
However, due to my years of experience with calcium lumps, I chose to delay any invasive surgery, mindful that my skin does not repair as quickly upon injury, and another scar, this time on my face.
Being a long term patient with a rare disease with no cure, and little known about the cause, has taught me that ‘prevention is most certainly better than cure’ especially when it comes to infections which may have been avoided, such as coughs and colds.
I wrote about my diet changes, here
And, I am extremely grateful to the Dermatologist Doctor, Dr Tiberiu Bontea, at Ormskirk General Hospital (my local Dermatology center) for his expertise and patience over the last 18months, whilst I plucked up the courage to have the procedure, as advised from the outset.
I wrote about the necessity of expert specialist centers, here
Dr Bontea kindly let me look at the ‘specimen’ which had been excised, prior to it being sent for further testing. It did not look like a calcium lump.
As well as, I am very grateful for my fellow long term scleroderma survivor friend Leyla, for her support, when I was having to accept that the biopsy road was the only avenue available, and of course, Thank You to all of my facebook global scleroderma friends for your comments and support and for sharing your personal experience of this scleroderma ‘added extra’.
In the meantime, I am under house arrest in an attempt to provide the best conditions for a ‘speedy’ healing recovery.
Living the dream, scleroderma style, hoping for a cure.
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.