Monday, 1 October 2018

Raynaud's Social Media Twibbon. Raynaud's Awareness Month, October 2019. Scleroderma, Autoimmune, Rare Disease

Raynaud's Social Media Twibbon.
Raynaud's Awareness Month, October 2019.
Scleroderma, Autoimmune, Rare Disease 




 
 
 
If you would like to add the Raynaud's twibbon to your Facebook / social media, Profile Picture - please Click here     



To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here      


 


To view more about the thermograph video equipment, Click here     


To view more about the thermograph image, Click here      
 
  
 
 

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here         



My Raynaud’s reality, Click here       
 
 


To read My ‘Invisible Disability’ experience, Click here     

Hottest day of 2013 - Im wearing Ugg boots and gloves to try and prevent a Raynaud's attack!

'How to diagnose Raynaud's', Click here    

50 Shades of Blue, Click here    
 
Raynaud's Awareness 2018, Click here     

Please DONATE to help fund medical research into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free Hospital, UK.  
 
 
All of your monies will be used for medical research purposes only, lead by the world trail blazer Dr Kevin Howell.   

Dr Howell and I, Sept 2017
#RaynaudsFreeWorld #RaynaudsAwarenessMonth #Research 
 

Facebook Page: Raynauds Unit Royal Free Hospital
  
Twitter, You Tube, Instagram: @RaynaudsRf

Living the dream, hoping for a cure ....  

  



 
To Read My Articles:   

Leaving a gift in my Will, Click here   

Planning for the Future, Click here  
 
Rare Disease Day 2019:  
 
Leaving a Legacy Gift, Click here     
 
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, 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  

2018 Scleroderma Awareness Raising and Medical Research, Click here      


Order your awareness t-shirt here    

June 2019
Huge Thanks to Ellen, Dianne and the Royal Free Charity team

Importance of an early diagnosis, Click here     

Unmet clinical needs, 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     

Sept 2017

Prof Chris Denton and I, Sept 2017
This year, 2019, I am celebrating 21 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.   
 
Read more, here.  
 
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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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.  

Read more about me, here  



Chat Magazine 16.5.19
 

World Scleroderma Day 2018, Click here    
 
World Scleroderma Day 2017, 29th June, Click here    

World Scleroderma Day 2016, 29th June. Origins of the date, Click here   

World Scleroderma Day 2015, 29th June. 

James Carver, myself, Prof Chris Denton, at The European Parliament 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   

To view my 2016 Scleroderma Awareness Campaign, A to Z Video, all you need to know:  


 
 
To view global patient profiles, my 2017/ 2018 video Scleroderma Awareness Campaign Index     


 
  
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here 
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here 
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here  
Scleroderma Awareness Month Flashback 2016, Click here   
 
RARE DISEASE DAY:
The theme to 2018 year's Rare Disease Day was 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. 

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
 
 



 

 

 
For latest updates follow: 
 
Facebook, Twitter, You Tube, Instagram: 
SclerodermaUnit Royal Free: @SclerodermaRF  
RaynaudsUnit Royal Free @RaynaudsRf 

Facebook Pages:


#SclerodermaFreeWorld #RaynaudsFreeWorld 
 
    

Please DONATE to help fund medical research into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free Hospital, UK.Thank You.
Last Update: September 2019.

 
 
 

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