Flashback Scleroderma Awareness 2017
Last month, June, was Scleroderma Awareness month, with 29th June being WorldScleroderma Day.
And, WOW, what a busy month it was, for raising awareness of our multi complex, 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 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.
Expert Specialist Centres
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!
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. The Niagara Falls in teal
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.
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.
USA based SclerodermaResearch Foundation 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.
So the rest of the year?
Huge thanks to USA patient Sharon Esposito for sharing her wonderful images for Scleroderma Awareness month. more
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 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.
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.
DAY1 – DAY 24, INDEX Scleroderma Awareness Campaign Patient Profiles 2017
DAY 25 – DAY 30, INDEX 2 Scleroderma Awareness Campaign Patient Profiles 2017
Please DONATE to help fund medical research at The Scleroderma Unit The Scleroderma Unit, The Royal FreeHospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.
|July 2017 Total|
Living the dream, hoping for a cure
#RareDisease #Hope #Belief
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An edited version of this article was published here in my Column with Scleroderma News.