Monday, 2 July 2018

GLOBAL PATIENT PROFILES INDEX. June Scleroderma Awareness Month 2018. Scleroderma, Raynaud's, Autoimmune Rare Disease.

June Scleroderma Awareness Month 2018.
GLOBAL PATIENT PROFILES INDEX

 Scleroderma, Raynaud's, Autoimmune Rare Disease
www.justgiving.com/fundraising/sclerodermaunit-royalfree
#SclerodermaFreeWorld #RaynaudsFreeWorld 
Please DONATE




 Alice Martins Correia, Switzerland.
June 1st is Alice's double lung transplant birthday - 6 YEARSMany Congratulations to Alice!


 Jacob Vidal Davila, USA.
 

Haslina Wannor, Singapore.


 Sarah Lloyd, UK.


 
Dr Susan Nyanzi, USA.


 Deani Baillie, UK.
 


 Janet Swerbenski, USA.
  

 Vanessa Cummings, UK.


Debbie King, Canada.

 Chris Milan, UK. 
RIP 10/6/59 - 4/3/17.


Misty Rushing, USA. 
 


DAY 12: Nicola Whitehill, UK.



Margie Kugler, Australia.


Denise Holmes, UK

 
Roy Louden, USA.
 

Jen Wells, USA.


Helena Gaspar, Portugal.


 Christine Wilson, UK.
 

Sheryl Bishop, USA.

 
Jennifer Moss, UK

 
Diwakar Rawat, India.


Sharon Harris, UK

 
Lori Pierce, USA.


Sarah Jatto, UK.


Patti Pascucci, USA.


Jan Petrie Procter, UK.


Kelli Schrag, USA.
 

Kevin East, UK. 
RIP 5th Jan 1967 - 7th Jan 2016.


WORLD SCLERODERMA DAY. 29th June.

WORLD SCLERODERMA DAY. 29th June 2018.
Thank You to Prof Denton 


  

 Anne Mawdsley, UK.  
RIP 31.5.42 – 12.10.2014
 
Scleroderma, Raynaud's, Autoimmune Rare Disease
#SclerodermaFreeWorld #RaynaudsFreeWorld  

I owe huge thanks to ALL of the patients who took part in the Scleroderma Awareness Month 2017, 2018, Global Patient Profiles Campaign: Research.  
 
Every patient’s story brought tears rolling down my face, as I put the campaign together.  

Which, had not been envisaged by me, whilst the idea of the campaign was in its infancy. 
 
My Sjogren’s overlap symptoms were on strike for a few/most days during June Scleroderma Awareness Month!  
 
Living with this diagnosis makes you dig deep into finding out who you really are, and what / who, is truly really important to you. 
 
As Bob Marley sang, ‘You never know how strong you are, until you have to be’.   

 
I hope that this Campaign has been of interest, not just from an educational perspective but also, from a supportive element to fellow patients.  


The Campaign has highlighted the universal hallmarks for best patient management, treatment and care.  

Namely: 
Early Diagnosis 
 
Expert Specialist Centres 
 
Access to Innovative Medicines 
 
  
As well as, the Campaign has highlighted universal global patient unmet clinical needs: 
 
Current Unmet Clinical Needs 2018, Click here 
CALCINOSIS, Click here  
GUM RECESSION, TOOTH EXTRACTS, Click here 
SOFT TISSUE, ULCERS, Click here  
TELANGIECTASIA, Click here 
SCLERODACTYL HANDS, Click here   
INVISIBLE DISABILITY, Click here 
RAYNAUD'S, Click here 
GASTROINTESTINAL, Click here
The campaign highlighted the URGENT need for an investment in medical research to improve the patient's day to day reality. 

As well as, the URGENT need for an investment in medical research to achieve a Scleroderma Free World.


To read my articles:

'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click 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  

CONCLUSION:  
 
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 


Early Diagnosis 
 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

 
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     
 

Raynaud's, Click here   
 
This year, 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. 
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. Read more, here 
 
For latest updates follow:  
 
 

Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
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 
 


   
THANK YOU AGAIN, TO EVERYONE WHO TOOK PART, AND, TO EVERYONE, WHO SHOWED THEIR SUPPORT FOR SCLERODERMA AWARENESS MONTH 2018. 
 
#SclerodermaFreeWorld  #RaynaudsFreeWorld 

June 2018.