Raynauds Scleroderma Global Patients: January 2018

2018 Key Event Dates - Scleroderma, Raynaud’s. Autoimmune Rare Disease

2018 Key Event Dates
Scleroderma, Raynaud’s

Autoimmune Rare Disease

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 24^th 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 5^th Systemic Sclerosis World Congress taking place 15^th – 17^th February in Bordeaux, France.

DETAILS

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, Raynaud's, autoimmune rare disease patient, previously.

February 28^th is Rare Disease Day. This year’s theme is RESEARCH.

www.rarediseaseday.org/

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.

In this video from last year, I explain why Research is so important to the scleroderma, Raynaud's, autoimmune rare disease patient.

‘Role of medical research’ and ‘Taking part in clinical trials’

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. More

March is Autoimmune Disease Awareness Month #ADAM.

15^th March Charity boxing match, London.

organised by Ben Milan in memory of his dad, Chris.

1^st – 3^rd 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 19^th May, Family Day at the Scleroderma Unit, The Royal Free Hospital.

This year is very special to me, as, I am celebrating my 20^th 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

Programme

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,

'my skin is cured from scleroderma'.

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.

JUNE is SCLERODERMA AWARENESS MONTH

2017 Flashback

29^th June WORLD SCLERODERMA DAY

2017 World Scleroderma Day Flashback

27^th – 29^th July Scleroderma Foundation National Conference

Philadelphia, Pennsylvania

October RAYNAUD’S AWARENESS MONTH

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.

An edited version of this article was published here, in my Column with Scleroderma News, January 2018.

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

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here

Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here

The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Importance of an early diagnosis, Click here

Taking Part in Clinical Research Trials, Click here

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here

Expert Specialist Centres, Click here

My Skin is Cured from Scleroderma, Click here

UK Guidelines for Managing and Treating Scleroderma, Click here

Fatigue, Click here

Mobility, Click here

Diet and nutrition, Click here

Raynaud's, Click here

World Scleroderma Day 29^th June 2016, Click here

World Scleroderma Day 29^th June 2017, Click here

Why Global Collaboration is important to the Rare Disease Patient, Click here

RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

2016 Rare Disease Day Patient Voice

2016 Rare Disease UK Parliamentary Reception

2017 Rare Disease Day Flashback

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

More unmet clinical needs

Rare Disease Day 2016

Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –

Medical Research provides the brightest light

for the illumination of the rare disease patients’ plight.

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.

VIDEO

INDEX

Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same:

Early Diagnosis

Expert Specialist Centres

Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here

Preamble - here

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19^th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre.

Sept 2017

I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.

I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004.

1^st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis.

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.

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