Last month, June, was
Scleroderma Awareness month, with 29th June being World Scleroderma Day.
And, WOW, what a busy
month it was, for raising awareness of our multi complex, autoimmune, Rare Disease.
In this article I
discuss the importance of raising awareness, along with the results of my
patient profile global campaign and medical research.
Why raise awareness?
This is our opportunity to spotlight the entire scleroderma and Raynaud’s experience in all of its forms.
Whether that be from the symptoms experienced,
to their management, as well as, the day to day reality, resulting from the
disease process.
Having a rare disease forces you to become your own patient advocate.
As well as, it forces you to become your own medical expert in your diagnosis, along with, its optimum treatment and best management. Expert specialist centres are crucial to implement this.
For 2017, I focussed my awareness month campaign on patient profiles and research across the globe.
This highlighted the
3 common hallmarks for best practice, regardless of location.
Namely:
Access to innovative medicines
At the end of Week 3, I discussed the current medical
research landscape in relation to making progress to discovering the cause and
cure of scleroderma and Raynaud’s.
The global patient profiles highlighted several current unmet clinical needs, showing that, although no two patients display the exact same set of symptoms, some similarities can be made.
I will be discussing
these clinical unmet needs in more detail, in future articles.
My fingers and eyes are still protesting at the increase in computer / keyboard use over the course of the month, with several new lumps of calcium appearing at the tips, due to excessive use. Living the dream indeed!
calcium on the pressure pad of my little finger |
Global interactions
Again, our friends over in Canada, showed the rest of the world how to raise awareness of scleroderma. Huge thanks to them, for all that they do, and continue to do:
On 29th
June, World Scleroderma Day, I was delighted to receive via the post, my
‘Me&Sclero’ goody bag – a total surprise and perfect timing!
A lovely bag,
information leaflet, T-shirt and business card.
Huge thanks to Sarah,
DAY 27, for her
generosity and her tireless awareness raising, all year round.
I am very excited
about Sarah’s scleroderma project, and I wish her all the success in the world,
with raising awareness of our disease. Please support her fundraising
efforts.
And Thank You to Sarah, for her generous donation to the Scleroderma Unit Just Giving Page.
USA based Scleroderma ResearchFoundation made a video, outlining the progress which has
been made so far, over the last 30 years. As well as, they raised an amazing
1.4 million at the Cool Comedy Hot Cuisine event, held in LA on 16th
June. Thank You!
So, the rest of
the year?
Huge thanks to USA
patient Sharon Esposito for sharing her wonderful images for Scleroderma
Awareness month. View more, here
As we know all too
well, sadly, our true reality is that we live with this diagnosis 365 days of
the year.
My 2016 Scleroderma Awareness Month campaign, focussed in more detail on the symptoms and body parts affected, with a flashback to my 2016 awareness, global efforts.
Our reality as a
patient:
Each day brings along a variety of different symptoms which have to be respected and prioritised, in the hope to have the best day possible, given the diagnostic reality.
On some days, this means spending the day in bed.
All of the patient
profiles showed, fatigue and tiredness, as constant
companions.
Medical Research
Progress:
5th World
Congress in Systemic Sclerosis, Bordeaux, France
The5th Systemic Sclerosis World
Congress is due to take place Feb 15 – 17 2018 in Bordeaux, France
next year.
This bi-annual event
is the hub of the most up to date advancements in research, and current
understanding of the entire scleroderma disease process.
Summary:
Overall, an improvement in the medical understanding as to the nature of the disease and its implications, has improved immensely, over the course of the last decade.
However, due to the multi complex body systems involved in the scleroderma, autoimmune disease process, research still falls way behind with providing an understanding as to the cause, and effective treatments, leading to a cure.
Thank You to everyone
who took part in the patient profile campaign, as well as, Thank You to
everyone for your support and encouragement throughout the campaign, sharing
the same dream – a Scleroderma Free World.
INDEX Scleroderma Awareness Campaign
Patient Profiles 2017
Please DONATE to help fund medical research
at The Scleroderma Unit, The Royal
Free Hospital, London where 100% of all of your monies will be used for
medical research purposes only. Thank You.
Living the dream,
hoping for a cure
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#RareDisease #Hope
#Belief
Follow Raynauds Scleroderma
Awareness Global Patients Facebook Page for latest updates
An edited version of this article was published here, in my Column with Scleroderma News.
July 2017.
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 Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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
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
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
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 Day Patient Voice
2017 Rare
Disease Day unmet clinical needs to the scleroderma patient
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
Scleroderma Awareness Month Campaign 2016, 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: Raynauds Scleroderma Awareness Global Patients
#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