Thursday 30 March 2017

29th June, World Scleroderma Day, 2016. The Origins of the date. Scleroderma, Raynaud's, Autoimmune Rare Disease


29th June - World Scleroderma Day 2016

The Origins of the date

Scleroderma, Raynaud's, Autoimmune Rare Disease

29th June is World Scleroderma Day.

This date is an opportunity for anybody with an interest in the rare disease, scleroderma (systemic sclerosis), to join together as a single, united global voice, to shine the spotlight on this relatively little understood rare disease. 

Due to the present unwelcome reality that is currently so, for the rare disease patient, the patient often becomes the medical expert in their diagnosis and best care.
The actual date, 29th June, commemorates the date when the gifted Swiss-German artist, Paul Klee (1879 – 1940) died.

The Wikipedia entry for Paul Klee includes:

‘In 1933, Klee began experiencing the symptoms of what was diagnosed as scleroderma after his death. The progression of his fatal disease, which made swallowing very difficult, can be followed through the art he created in his last years. His output in 1936 was only 25 pictures. In the later 1930s, his health recovered somewhat and he was encouraged by a visit from Kandinsky and Picasso……..

Klee suffered from a wasting disease, scleroderma, toward the end of his life, enduring pain that seems to be reflected in his last works of art.

One of his last paintings, Death and Fire, features a skull in the center with the German word for death, "Tod", appearing in the face. He died in Muralto, Locarno, Switzerland, on 29 June 1940 and was buried at Schosshaldenfriedhof, Bern, Switzerland.’

This is most interesting for me to learn, since I recently posted a quote by Picasso about the meaning of life, on my


Klee’s work was, and is, still admired around the world today. 

It is interesting for me to read, having been on the scleroderma fun bus for nearly 20 years now, that his main work focus was movement and fluidity, with him writing in 1920, ‘Motion is at the root of all growth’. 

And of course, his diagnosis of diffuse scleroderma would have severely impeded his personal movement, and it is this, his symptoms, which are thought to have inspired his later work, which was block based themed.

The book: Paul Klee and His Illness: Bowed but Not Broken by Suffering and Adversity Translated from the German by G. McKay; N. McKay 1st Edition is available to buy and includes a similar diagnosis nightmare as seen today, although, a maybe quicker today, thankfully:  

‘It is thought that it was not until 10 years after Klee’s death that the illness was actually given the name ‘scleroderma’. 

This was due to a pioneering dermatologist and venereologist, Dr Hans Suter, who had been fascinated by Paul Klee and his art which spurred him to commence research into the illness and its influence on the art of Paul Klee’s final years. It was due to Dr. Suter’s meticulous investigations that Klee’s illness could be defined as ‘diffuse systemic sclerosis………’

‘In this book the author assembles his findings and describes the rare and complex disease in a clear and comprehensible way. Further, he empathetically interprets more than 90 of Klee’s late works. 

The point of view of a dermatologist renders a unique source of information. It provides, on one hand, new insights into everyday medical practices at the University of Bern in the 1930s, which will fascinate doctors and local historians alike. While, on the other hand, art historians and art lovers will be absorbed by the newly discovered links between Paul Klee's work and his illness.’  

For more info, Click here


Keep up to date with the latest information on World Scleroderma Day 2017 by following this blog and linked Facebook Page   

also follow:

Click here, to read my article for World Scleroderma Day 2017 

Click here, to read my synopsis of Scleroderma Awareness Month 2016   

In all articles I offer suggestions on how to get involved, regardless of your physical ability.

To view my article 'why global collaboration is so important', Click here   


I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

To view the presentation, Click here

I had not been abroad for over a decade prior to this trip, and my 7 week bed rest following the trip, was a harsh reminder as to why I had not been away for so long!!

Let’s make 2017 the noisiest World Scleroderma Day so far, as together, united globally we will crack the Ssc code ~ living the dream, in the hope for a cure :) 

An edited version of this article was published here, in my Column with Scleroderma News. April 2016. 

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

Key Event Dates 2018, 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 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   

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

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  

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. 


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


View video, here   

Preamble - here

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th 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. 

1st 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.
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  

#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma

Living the dream, scleroderma style.  

Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  

100% of your monies will be used for medical research purposes only. No wages or admin costs. Thank You.


Last Update: April 2018


1 comment:

  1. prof premraj pushpakaran writes -- Let us celebrate World Scleroma Day!!