Thursday, 12 October 2017

RIP Anne Mawdsley 31.5.42 – 12.10.14. World Arthritis Day, Raynaud’s Awareness Month, October 2018. Scleroderma, Autoimmune Rare Disease.

RIP Anne Mawdsley 31.5.42 – 12.10.14.


World Arthritis Day,

Raynaud’s Awareness Month, October 2018.

Scleroderma, Autoimmune Rare Disease. 




RIP Anne Mawdsley 31.5.42 – 12.10.14.


World Arthritis Day,

Raynaud’s Awareness Month, October 2018.

Scleroderma, Autoimmune Rare Disease.


It is 4 years ago, today, that Anne, sadly, passed away further to her 30 year experience of living with Raynaud’s and scleroderma. 

Without a shadow of a doubt, myself and the entire global community are eternally grateful to Anne, for all that she did in improving the whole landscape to understanding the cause and cure, whether that be by way of the RSA (her charity) paying for much needed equipment to enable the researchers and doctors to investigate further into the diseases, to, supporting patients, and raising awareness of the diagnosis, as a whole.  

 
Campaign


I made Anne the focus of the final day of my Scleroderma Awareness Month Patient Profiles Campaign 2017 Flashback and 2018 global patient profiles campaign for Scleroderma Awareness Month. INDEX  

Whereby I concluded: 
 
‘It is with deep sadness that I am writing this profile, however, I know that Anne is in a pain free, scleroderma and Raynaud’s free, place now.  

I am truly grateful for her friendship and all that she did to pave the way to improve the landscape for patients in so many aspects.  

This was highlighted and recognised within the P152 Poster ‘Optimizing Scleroderma Centers of Excellence: Perspectives from Patients and Systemic Sclerosis (SSc) Experts’ presented at the 4th Systemic Sclerosis World Congress held in Lisbon last year. 

With an acknowledgement 'dedicated to the memory of Anne, founder of the Raynaud’s and Scleroderma Association UK, who raised over 10 million pounds for SSc research, education and advocacy in her lifetime.'   

P152 Poster is included within Volume 1 Number 1 of the Journal of Scleroderma and Related Disorders, and can be downloaded to view, Click here



Read my full article about Anne, Click here     

Raynaud’s Unit, Royal Free Hospital, UK. Facebook Page 





If you would like to add the Raynaud's twibbon to your Facebook 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 Thermograph Video, Click here   
To view Thermograph image, Click here   
   
My Raynaud’s reality, Click here   

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here  
 
To read My ‘Invisible Disability’ experience, Click here   

'How to diagnose Raynaud's', 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

Facebook Page: Raynauds Unit Royal Free Hospital
  
Twitter: @RaynaudsRf 


Living the dream, hoping for a cure ....
 
 
To read my articles: 

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     

OCTOBER: 
 

Raynaud's- How to Diagnose, Click here    

This year, 2018, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Sept 2017

Prof Chris Denton and I, 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. Along with the Raynaud's world trail blazer, Dr Kevin Howell. 

Dr Howell and I, Sept 2017
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. 
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. Read more, here   

Global Patient Profiles Campaign 2018 Video, Click here   

2018 Scleroderma Awareness Raising and Medical Research, Click here  

Importance of Medical Research and Awareness Raising, Click here  

NIHR Video: 'My Experience of Clinical Trials', Click here   
  
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  
My 2016 Scleroderma Awareness Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here   
 
March 2018 Autoimmune Disease Awareness Month, 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

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 article 'Why Global Collaboration is Important', Click here  
 
PLEASE DONATE here   

#SclerodermaFreeWorld #RaynaudsFreeWorld 

Oct 2018.


No comments:

Post a Comment