Tuesday, 2 May 2017

June Scleroderma Awareness Month - Flashback 2016. Scleroderma, Raynaud's, Autoimmune Rare Disease


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. 

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

Preamble - here   


DAY 1           Organogram different types  
 

DAY 2           Symptoms / areas affected   
  

DAY 3           All body parts can be affected    

     
DAY 4           Symptoms      

   
DAY 5           Diagnostic tests


DAY 6           EULAR classification    


DAY 7           Raynaud's      


DAY 8           Management of Raynaud’s   
  

DAY 9           NHS DU Policy   
  

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 18         Skin  


DAY 19         Calcinosis     


DAY 20         Bone, joints, muscles = MSK   


DAY 21         Gastro-intestinal upper  


DAY 22         JSRD - Journal of Scleroderma and Related Disorders 

 
DAY 23         Kidney     


DAY 24         Digital Ischaemia management  


DAY 25         Pain


DAY 26         Gastro-intestinal lower


DAY 27         Skin


DAY 28         Other symptoms
  

DAY 29         World Scleroderma Day 2016 
 

DAY 30         Patient healthcare 'Dream Team'  


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.

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.

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!  


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


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   


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    


The Importance of a Multi Disciplinary Medical ‘Dream Team’, 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      

Mobility, Click here    


Diet and nutrition, Click here     


Raynaud's, 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 UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  





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



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

Links

View video, here   

Preamble - 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  


#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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