Tuesday, 11 July 2017

29th June World Scleroderma Day 2017, Raynaud's, Rare Disease



29th June World Scleroderma Day 2017   


29th June, is World Scleroderma Day.  

This is OUR opportunity to showcase the rare disease, scleroderma, to the World- in the hope to raise awareness, in all of its guises. 

Whether it be awareness for fundraising purposes for investment in research, for that oh so desired cause and cure, or, awareness, for education purposes. 

This is OUR day to put the spotlight on the rare disease which we live with, 365 days of the year, with no holiday break from it. With hope and pain, as our constant companions. 

Thanks to Sharon for sharing all of her wonderful images for #SclerodermaAwareness month.. https://plus.google.com/communities/115644437712711107914/stream/7586f507-cd2a-44e5-9931-9e24932fc2d4


Why 29th June?  

The actual date, 29th June, commemorates the date when the gifted Swiss-German artist, Paul Klee (1879 – 1940) died. It is thought that it was not until 10 years after his death, that Klee was diagnosed with diffuse systemic sclerosis. 

I discussed this in more detail in a previous article here  


June Scleroderma Awareness Month 2017 Patient Profiles and Research Campaign 



This year my June Scleroderma Awareness Month campaign has been focussed on Patient Profiles, Click here to view the Index. Including patients from all over the world, highlighting the best practice and management of the scleroderma patient, along with the current unmet clinical needs, Click here 

I have combined these requirements with the current medical research focus for such, Click
here, and I will be providing an overall outcome in due course.  

DAY 29, World Scleroderma Day, focussed on the extremely brave USA child patient, Wyatt the Warrior, Click here

   
However, the main golden hallmarks for best practice, regardless of the location are:  


Early Diagnosis 


Expert Specialist Centres 


Access to innovative medicines  
 

These golden hallmarks run parallel to medical research being at the nucleus for optimum management and prevention.  

By understanding the biological processes as to why the immune response is triggered in the first instance, for the body to then manifest such symptoms, will most certainly reduce the life time burden this disease brings. 

Financial investment in medical research, along with global collaboration of progress in understanding is paramount. The launch of the Journal of Scleroderma and Related Disorders (JSRD), http://www.sclerodermajournal.com/, at the 4th Systemic Sclerosis Congress, last year, is a most welcome advancement in the sharing of scientific data and understanding. 

The contents of the Journal, as by the current 5 Issues, show the current clinical research areas of focus for the entire, holistic, scleroderma experience.  

The 5th Systemic Sclerosis World Congress,http://www.sscworldcongress.org/, is due to take place Feb 15 – 17  2018 in Bordeaux, France next year, where the most up to date research data will be presented.  

  

WORLD SCLERODERMA DAY 2017 

Similar to last year, there are numerous events being held worldwide, varying from ‘out and about’ walk in the park activities, to virtual walk social media participation.  
 
Our friends over in Canada continue to set the bar high, for the rest of the world, with their scleroderma awareness raising. As again, this year, they are lighting Niagara Falls in blue and the Peace Bridge in teal. If you can not experience this in person, you can watch it live via the Scleroderma Canada Facebook Page   
 
Although not nearly as thrilling as seeing the Niagara Falls, I will be presenting live on the Scleroderma News Facebook Page. Please comment below if there are any topics in particular, which you would like me to discuss.

The Scleroderma Unit, The Royal Free Hospital, London
Long term diffuse systemic sclerosis patient Lyn is holding her debut book launch. I am very excited for Lyn, as I am sure you are.


WORLD SCLERODERMA DAY 2016

Last year saw a very busy 29th June World Scleroderma Day with activities and events taking place all over the world, as well as, a very busy June Scleroderma Awareness Month 2016, Read More 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. 

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

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!! However the experience remains one of my few patient highlights of the last 20 years.  

 


Wishing you a very happy and most blessed 29th June World Scleroderma Day.

An edited version of this article was published here  for my column  with Scleroderma News. 

 




To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here    

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here       

Week 1 Scleroderma Awareness Month, Raynaud's, Rare Disease, 2017 – Patient Profiles Campaign, Click here

Week 2 Scleroderma Awareness Month, Raynaud's, Rare Disease, Patient Profiles 2017, Progress in medical research, Click here  

Week 3, Medical research areas of current interest, Scleroderma Awareness Month, Raynaud's, Rare Disease 2017, Patient Profiles Campaign, Click here   

DAY1 – DAY 24, INDEX Scleroderma Awareness Campaign Patient Profiles 2017,
Click here      

DAY 25 – DAY 30, INDEX 2, Scleroderma Awareness Campaign Patient Profiles 2017,
Click here

INDEX to Scleroderma Awareness 2016 Campaign, Click here   


To read my articles:  

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

World Scleroderma Day 29th June 2016, Click here  

Please donate to help fund medical research at The Scleroderma Unit 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 


#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates   https://www.facebook.com/RaynaudsSclerodermaGlobal/    

Thanks to USA patient Sharon

Journal of Scleroderma and Related Disorders (JSRD) – Abstracts Volume 1, Scleroderma Awareness Month, Raynaud’s, Rare Disease, 2017, Patient Profiles, 
Click here


Please use the icons below to share this article #SclerodermaAwareness

#SclerodermaFreeWorld #RaynaudsFreeWorld

#RareDisease #Hope #Belief






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