‘You have scleroderma’, followed by, ‘and Raynaud’s phenomenon. There is no cure. Your disease is so aggressive that you are looking at 15months maximum. Forget being a barrister’.
|Prof Chris Denton and I, Sept 2017|
|August 2017 outside my local hospital|
This removes the immense physical exertion of me dragging my 'tin man' body to attend the expert centre Scleroderma Unit at The Royal Free Hospital in London, to only a few times a year.
With my local NHS service providing my interim follow up care.
|Dr Sykes and I, August 2017|
I am monitored by Dr Sykes in-between my appointments with Prof Denton, which has been essential to me managing my symptoms optimally.
I would have to psyche myself up in my car prior to telling the junior doctors what had happened to me at their age (24). Upon returning to my car, I would wail for about half an hour.
Now, I no longer wail, and have become a scleroderma and Raynaud’s parrot, living the dream.
The only medication which I take is Bosentan.
I have to attend the rheumatology clinic, (run by the lovely Denise and Eils, the rheumatology nurses), for bi-monthly blood tests to monitor my bosentan levels.
|Andrea, the outpatients pharmacist, and I, August 2017|
Andrea has been exceptional in obtaining tablets for me, which I can swallow, as my oesophagus has been damaged by scleroderma.
DAY 5 Scleroderma Awareness Month Campaign 2016.
|thanks to Sarah 'me & Sclero' for her photo, used in the image|
|Lung Function Testing Equipment|
|Outside my GP surgery, Cumberland House, August 2017|
In particular I am grateful to Dr Irvine and Dr Randall for their continued support with my ‘not so’ urgent, but still relevant, symptom management.
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
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates.
I highlighted my 'dream team' members on DAY 30 of my 2016 Scleroderma Awareness Month Campaign.
I detail my current dental involvement here.
As well as, DAY 18 of my 2016 Scleroderma Awareness Month Campaign.
I am very grateful to my dental 'dream team', Dr Andrew Booth, Dentist; and Louise Doran, dental hygienist.
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 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
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.