Medical ‘Dream Team’ for Best Patient Care
‘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.
|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.
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#RareDisease #Hope #Belief
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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.
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
2016 Rare Disease Day Patient Voice