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 cosmicfairy444.blog
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
HOW YOU CAN GET INVOLVED:
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
|
||
WORLD SCLERODERMA DAY 2015:
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!!
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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
RARE DISEASE DAY:
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 Day Patient Voice
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
VIDEO
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
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
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.
#HOPE
Last Update: April 2018
prof premraj pushpakaran writes -- Let us celebrate World Scleroma Day!!
ReplyDelete