No two patients present with the exact same identical set of symptoms.
Diffuse / systemic scleroderma affects the entire body, making for a multi-disciplinary medical team paramount, for best patient optimum care.
Attending and preparing for medical appointments, is a full time job, even when the symptoms have stabalised.
I wrote about my ‘scleroderma medical dream team’, here
This includes my daily skincare routine, which has contributed to my recent medical breakthrough ‘my skin is cured from scleroderma’, as well as, my daily juice smoothies and strict diet, Click here
On Dec 8th 2016, I was live on the Scleroderma News facebook page, talking about my recent skin reversal, as well as, I shared some of my scleroderma survival tips.
This was my live debut, and although my phone signal brought about an earlier finish than planned, I very much enjoyed the experience, and I was delighted with the fantastic audience who joined me live. THANK YOU
This is why, an early diagnosis is essential for a more favourable outcome to the scleroderma patient. I wrote more about this, here
On October 31st 2016, the UK Government published an open consultation on ‘Work, health and disability green paper: improving lives’.
I would urge every UK patient and non-patient alike, to add their view to this consultation.
The hidden, sometimes invisible, challenges include chronic fatigue and pain.
Both, can not be underestimated with the devastation that they can bring, alone or combined, on a day to day basis, to the scleroderma patient.
I wrote about FATIGUE, here, PAIN and HAIR LOSS, here
Unfortunately, the full time job of being a scleroderma patient does not allow for annual leave or a ‘holiday’ from the symptoms, yet.
Investment in medical research combined with patient interaction by way of spreading awareness and involvement is key for a permanent scleroderma holiday of the future.
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
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.