June
Scleroderma Awareness Month - Flashback 2016
Scleroderma, Raynaud's, Autoimmune Rare Disease
Well, unless you had a month away from your internet connection, you will know that June was Scleroderma Awareness month, with World Scleroderma Day, highlighting at the end of the month on the 29th.
However, as we scleroderma
patients know only too well, we live with scleroderma for the remaining 364
days of the year, and this reality is not something which we can switch off at
5pm, until the next working day.
We are living and breathing this as our reality, 24hours a day, 7 days a week, and so, (for me at least, and I am sure that I can speak for every scleroderma patient on this), there is a huge urgency for an improvement in the current scleroderma patient landscape.
The awareness month and featured World Scleroderma Day can be optimised as a springboard in helping with this.
We are living and breathing this as our reality, 24hours a day, 7 days a week, and so, (for me at least, and I am sure that I can speak for every scleroderma patient on this), there is a huge urgency for an improvement in the current scleroderma patient landscape.
The awareness month and featured World Scleroderma Day can be optimised as a springboard in helping with this.
 |
| Thanks to USA patient Sharon Esposito for this image |
At Scleroderma News, daily information posts about scleroderma and all that it entails were published, throughout June.
Thank You for the huge response to these posts and I am delighted that they were of interest.
My intention was to focus on the many current unmet needs of the scleroderma patient, in the hope for improved understanding and treatments to be made available.
View video, here
DAY
5 Diagnostic tests
DAY 7 Raynaud's
DAY
10 Skin involvement
DAY
11 Gastro-intestinal
DAY
12 Nicola Whitehill Birthday
DAY
13 Factor XIII Clinical Trial
DAY
14 Fatigue
DAY
15 Kidney involvement
DAY
16 Heart
DAY 17 Lungs
DAY
23 Kidney
DAY
24 Digital Ischaemia
management
DAY
29 World Scleroderma Day 2016
Here are a few highlights from
June Scleroderma Awareness month 2016 and World Scleroderma Day 2016:
This year saw scleroderma
patients along with their families and friends participate in various walks
across the United States organised by the Scleroderma Foundation. For more
information about this, Click here
The Scleroderma Research
Foundation (SRF) flooded social media with their hardword.org campaign. To read
more about this, Click here
On the 7th June,
The SRF also held their signature Cool Comedy Hot cuisine night with Bob Saget,
in San Francisco at the Fairmont Hotel and raised an awesome $600,000 for
research.
Actelion, the pharmaceutical
company, put together a very informative clip focussing on the true reality of
the day to day living of two different scleroderma patients. Click here
FESCA also put together a you
tube clip about a fairy princess in line with their ‘hand in hand for a better
future’ campaign. Click here
The pharmaceutical company
Boehringer-Ingelheim also put together a clip which focussed on the patient,
Ilaria. Click here
However, in my view, the
accolade for showing the rest of the world as to how to raise awareness of
scleroderma, has to go to the combined efforts of the Scleroderma Society of
Canada and the Scleroderma Society of Ontario, for not only organising for the
CN Tower to be lit up in blue, but for the awesome effort of organising for the
Niagra Falls to be lit up in teal / blue on World Scleroderma Day. To see the video of
this, Click here
And furthermore, on behalf of
those living with scleroderma and pulmonary arterial hypertension, Ontario MPP
Michael Harris delivered 833 postcards to the Hon. Eric Hoskins, Minister of
Health and Long-Term Care, requesting he puts words into action and ensure all
PAH patients have immediate, publicly funded access to all Health Canada
approved PAH medications.
A Walk was also held on June
25th at Budapest Park, Toronto, along with other runs, making a
combined total of $356, 479 raised.
ABRAPES, The Brazilian
Scleroderma Society held several events, one of which was an education day at
the hospital in Rio, which involved patients and medics alike.
Scleroderma Singapore, Scleroderma Switzerland, Scleroderma Australia, Scleroderma Italy and Scleroderma India held similar events also.
Scleroderma Netherlands held a visual art exhibition at the European Parliament.
Scleroderma Singapore, Scleroderma Switzerland, Scleroderma Australia, Scleroderma Italy and Scleroderma India held similar events also.
Scleroderma Netherlands held a visual art exhibition at the European Parliament.
On a personal level, I had an
extremely busy month which resulted in very sore fingers by the end of it all!
By the first day, I was delighted to be featured in my local media online and
in print, as well as The Daily Mail online, which prompted a global response,
including the China Times, and Turkey Times!
Here are some of the links:
I was, and remain so,
absolutely over the moon, to have smashed my personal scleroderma awareness
month fundraising target goal of £500 for Professor Denton’s medical research
at the scleroderma unit at The Royal Free Hospital, with the current total of £647.76.
On the 29th June,
in honour of World Scleroderma Day, I launched the new google plus community
for Raynaud’s Scleroderma Awareness Global Patients.
The purpose of this community is to bring together a global space for sharing of best practice for scleroderma and Raynaud's patients, using google translate for non English speaking patients.
Please register as a member (it is free), and contribute / share anything which you think is of interest.
The daily awareness posts published here on Scleroderma News can also be found under their relevant subject headings, on the community page, which is linked and twinned to my blog here at Scleroderma News.
The purpose of this community is to bring together a global space for sharing of best practice for scleroderma and Raynaud's patients, using google translate for non English speaking patients.
Please register as a member (it is free), and contribute / share anything which you think is of interest.
The daily awareness posts published here on Scleroderma News can also be found under their relevant subject headings, on the community page, which is linked and twinned to my blog here at Scleroderma News.
Here is the link
Although my fingers and eyes
have been on strike for the first week of July, after overuse for scleroderma
awareness month, I really think that this year had the most momentum and
coverage for awareness, so far.
The plans for next year have already begun!
The plans for next year have already begun!
It was a great opportunity to
meet so many different scleroderma patients from around the world, who share
the same dream as me – a scleroderma free world, and united globally, this will
become a reality, and in my lifetime….. I hope.
#SclerodermaFreeWorld
#SclerodermaFreeWorld
For further 'engaging your community for fundraising' ideas from Findacure, Click here
An edited version of this article was published here, in my Column with Scleroderma News.
July 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
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