Sunday, 21 January 2018

2018 Key Event Dates for the rare Autoimmune disease Scleroderma and Raynaud’s

2018 Key Event Dates for the rare Autoimmune disease Scleroderma and Raynaud’s 

2018 is looking to be a very busy and exciting year for scleroderma patients, filled with many awareness and fundraising events.
Maybe this is the year, where the cause and cure will be discovered?!  #SclerodermaFreeWorld, how wonderful that would be!
Before I discuss some of the many events scheduled for the year, I would like to thank everyone who contacted me during my time away from my column, over the last few months.
I am slowly recovering from post traumatic stress disorder further to the sudden passing of my mother from pancreatic cancer and primary billary cirrhosis (another rare disease) on 24th October 2017. I am grateful to have been holding her hand for her final 72 hours at her house, and know that the ‘suddenness’ was a blessing to her when looking at the ‘bigger picture’.
Then, on Christmas Day, I developed shingles! Which, with huge thanks to the NHS Direct service here in the UK, I was able to take the antiviral medication quite swiftly, albeit the pain in my back continues to be extreme.

So, Starting off the events for the year, is the 5th Systemic Sclerosis World Congress taking place 15th – 17th February in Bordeaux, France.
As many of my column followers may know, to attend the World Congress has been my personal goal since it started in 2010. However, sadly, my tin man body has always prevented me from going, and unfortunately, this year is no exception. 
The physical exertion required for just the travel, will be too much for my body at the moment. This is a huge disappointment to me. I was very much looking forward to meeting everyone, including Rosario from Brazil who runs ABRAPES, the Brazilian scleroderma association, and of course the amazing Alice, from Switzerland, to name just a few!
I have written about why global collaboration is so important to the scleroderma rare disease patient previously.

February 28th is Rare Disease Day. This year’s theme is RESEARCH. 
RESEARCH provides immense hope to patients. Hope that a cure will be found, along with improved disease modifying agents. As well as, the cause to this rare autoimmune disease, being understood.

is a recap video from last year, where I explain why Research is so important to the scleroderma rare disease patient.

Last year, for my Scleroderma Awareness Month Campaign 2017, I focused on RESEARCH and global patient profiles, highlighting the many unmet clinical needs to the patient. 

Current trials taking place at the Scleroderma Unit.

15th March Charity boxing match, London. 
organised by Ben Milan in memory of his dad Chris.

1st – 3rd May The British Society For Rheumatology (BSR) is holding its Annual Conference in Liverpool, UK. There are a few sessions scheduled for scleroderma. I very much hope to be able to drag my tin man body to them, since Liverpool is the nearest city to Southport, where I live!

Here is the presentation which I had the pleasure to present to the Conference in 2015.

Saturday 19th May, Family Day at the Scleroderma Unit, The Royal Free Hospital.
This year is very  special to me, as, I am celebrating my 20th year anniversary of being a patient at the Unit. I very much hope to see you there, as I will most certainly be in attendance, even if my body protests for the rest of the year, grounding me! Provisional 
If I am truly honest, I really did not think that I would still be around in 2018, having been given a 15month prognosis  in 1997, by my diagnosing doctor. 

In December 1998, I became a patient at the Scleroderma Unit. I am eternally grateful for the medical expertise of the superhuman beings Dame Prof Black and Prof Chris Denton.
I am now, no longer able to continue in my 60 hour week role as a barrister, as managing my symptoms is a full time job! 
However, I know that I am a lucky scleroderma survivor, as I have minimal internal organ damage.
In December 2016, I was delighted to hear Prof Chris Denton confirm to me that 

Hence my enormous appreciation to Prof Chris Denton and the team at the Unit, reflected by my awareness and fundraising efforts for the Unit’s research programme. Where the entire donation will be used for essential medical research purposes only.

My experience has shown that an early diagnosis is crucial to prevent any possible life threatening damage, along with, multi disciplinary follow up medical care headed by a specialist expert is paramount for best patient care.

2017 Flashback 

2017 World Scleroderma Day Flashback   

27th – 29th July Scleroderma Foundation National Conference
Philadelphia, Pennsylvania  


My childhood dream was to be a barrister. Scleroderma tried to destroy this dream. With Prof Denton's help, I achieved this dream on 1st March 2004. Although, sadly, I am not physically able  to carry out the role. 

My dream now, is #SclerodermaFreeWorld, where, investment in medical research is ESSENTIAL . 

Living the dream, scleroderma style. 

Please DONATE to help fund medical research at the SclerodermaUnit, the Royal Free Hospital, London.

#SclerodermaFreeWorld #RaynaudsFreeWorld 

#RareDisease #Hope #Belief 

Follow Raynaud’s Scleroderma Awareness Global Patients Facebook page for the latest updates. 

An edited version of this article was published in my Column with Scleroderma News,