As well as, my personal rationale for making the ‘patient profile combined with research campaign’, for June scleroderma awareness month 2017. Week 3.
Whereupon, I was subjected to a rigorous 18month chemotherapy regime which eventually stabalised my symptoms. With my ‘Skin now being cured from scleroderma’, 19 years later.
At the time, 1997, I was working in the pharmaceutical industry as a medical representative, as well as, studying towards my barrister qualifications on a distance learning basis. I was advised to give up my dream of being a barrister and to accept my medical fate.
I am now 13 years immunosuppressant / chemotherapy free. The only medication which I take is bosentan 125mg twice a day, along with Co-Proxamol analgesics for emergencies.
Sadly, the physical requirements of the barrister role were too demanding on my scleroderma and Raynaud’s damaged body.
Namely, musculoskeletal pain, GERD involvement, calcinosis and I have extremely sensitive Raynaud’s.
I also have a strict diet.
|Hottest day of 2013 - I had to wear Ugg boots and gloves|
Prior to my body developing scleroderma and Raynaud’s, I was a very outgoing social individual. Now, my social life, as well as my working / career life has been superseded by medical appointments taking priority in my diary and depleting my limited energy stores.
I am sure, every scleroderma and Raynaud’s patient can relate to a similar intense disappointment and sadness at not being able to fulfil a desire, due to their body not being up to it.
Infact, all exercise is extremely challenging for my ‘tin man’ body. I have the utmost respect for my fellow patients who are still able to exercise.
I have shared more of my coping strategies on my www.cosmicfairy444.blogspot.co.uk
Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.
#RareDisease #Hope #Belief
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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.