Renal Crisis Exclusive: SSc Expert Prof. Christopher Denton’s BSR Presentation

Renal Crisis Exclusive: SSc Expert Prof. Christopher Denton’s BSR Presentation

BSR

The BSR held its annual conference recently in Glasgow. There were 3 sessions dedicated to Systemic sclerosis, scleroderma, over the duration of the 3day conference.

Will Gregory, Ssc specialist physio, kindly shared his experience of day2 with Scleroderma News readers. To read the article, click here

The schedule for the first day-

MANAGEMENT OF VASCULAR MANIFESTATIONS OF THE SKIN, KIDNEYS AND GI TRACT IN SYSTEMIC SCLEROSIS
April 26, 2016, 11:30 AM – 1:00 PM Clyde Auditorium
4 Presentations
11:30 – 1:00 PM – Chair
ARIANE HERRICK, Rheumatology, Salford Royal NHS Foundation Trust, Manchester, UNITED KINGDOM.
11:30 – 12:00 PM – Evaluation and management of cutaneous vascular manifestations of systemic sclerosis
JOHN PAULING, Rheumatology, Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, Bath, UNITED KINGDOM.
12:00 – 12:30 PM – Scleroderma renal crisis
CHRIS DENTON, Centre for Rheumatology, University College London, London, UNITED KINGDOM.
12:30 – 1:00 PM – Management of gastrointestinal vascular manifestations of systemic sclerosis
CHARLES MURRAY – Royal Free, London, UNITED KINGDOM.

Professor Christopher Denton has very kindly shared his slides of his presentation which focussed on Scleroderma renal crisis. I have edited out the ‘not so’ academic slides to provide a flavour and synopsis of the current landscape in relation to scleroderma and renal crisis, to scleroderma news readers.

It is with huge thanks to Prof. Denton for not only making his slides available, but also for the tireless dedication and commitment which he shows to the global scleroderma community, and has shown, over the last 2 decades.

From a patient perspective, I am of the view that the contents of this presentation show that the understanding of the disease as well as its complications and management have advanced immensely over the last 40 years. Which, of course, is extremely encouraging when living with this diagnosis as your day to day reality. It is very encouraging to see that, what was the biggest contributor to mortality, is now the least contributor, due to better understanding, management and treatment options available. Fibrosis of the lung, being the highest risk factor now.

I was diagnosed in 1997 with diffuse, and it was not until I changed to Prof. Dame Black and Prof. Denton at the Royal Free Hospital in London in 1998 did I discover that I had the RNA polymerase type. The fear which this knowledge brought about, at that time, is indescribable. However, 18 years later, with only the last 3 years of those being alcohol free, I am grateful to my kidneys for hanging in there!

As we know, scleroderma still remains a very mysterious anomaly in the autoimmune umbrella of diseases. With increased awareness, global unity, and global research, we are already seeing an improvement in patient management and care. Long may this continue!

And of course, huge thanks again to Prof. Denton for making this successful, encouraging evidence based medicine information available to the global Ssc community, and for all that he does for the global Ssc community.

Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.
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Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis…… I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline ‘The Real Life Tin Man’ and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

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