Thursday, 1 June 2017

Patient Profiles Campaign Index, Scleroderma Awareness Month June 2017, Raynaud's, Autoimmune Rare Disease

Patient Profiles Campaign Index  
Scleroderma Awareness Month 2017 


Each day throughout the month of June, I will be publishing a different patient profile from around the world.

Each patient has kindly completed a set of questions, highlighting their scleroderma and Raynaud’s experience so far.  

It is with huge thanks, I offer to all of those patients who have shared their experience, in the hope, to raise awareness of the scleroderma and Raynaud’s diagnostic abyss.  

Albeit, progress in research and understanding is improving, slowly. As evidenced by the launch of the Journal of Scleroderma and Related Disorders, JSRD, last year, at the 4th World Systemic Sclerosis Congress.

For details about the 5th World Systemic Sclerosis Congress, Feb 2018, Bordeaux, France, Click here    



At the start of my project, in no way, did I envisage just how humbling this experience would be, to connect with my fellow patients on a global level, with them allowing me, into their day to day reality of living with this diagnosis.   

I have to say, scleroderma patients are some of the most brave and strong people I have ever come across, in all walks of my life, so far. 

And again, I would like to offer my sincere thanks for their support and for sharing the same dream #SclerodermaFreeWorld.    


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


To read Week 1 Synopsis - Unmet Clinical Needs, Click here

To read Week 2 Synopsis - The progress of medical research, Click here


INDEX June Scleroderma Awareness Month 2017 Patient Profiles:  


Alice Martins Correia, Switzerland, DAY 1     

Alice Martins Correia, Switzerland



Jacob Vidal Davila, USA, DAY 2 

Jacob Vidal Davila, USA 





Haslina Wannor, Singapore, DAY 3   


Haslina Wannor, Singapore


Sarah Lloyd, UK, DAY 4  


Sarah Lloyd, UK


Dr Susan Nyanzi, USA, DAY 5


Dr Susan Nyanzi, USA


Deani Baillie, UK, DAY 6

Deani Baillie, UK



Janet Swerbenski, USA, DAY 7     

Janet Swerbenski, USA 


Vanessa Cummings, UK, DAY 8
Vanessa Cummings, UK 


Debbie King, CANADA, DAY 9    

Debbie King, CANADA



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

Chris Milan, UK



Misty Rushing, USA, DAY 11
Misty Rushing, USA



Nicola Whitehill, UK, DAY 12
Nicola Whitehill, UK




Margie Kugler, Australia, DAY 13
Margie Kugler, Australia


Denise Holmes, UK, DAY 14
Denise Holmes, UK


Roy Louden, USA, DAY 15 
Roy Louden, USA


Jen Wells, USA, DAY 16
Jen Wells, USA


Helena Gaspar, Portugal, DAY 17  
Helena Gaspar, Portugal


Jennifer Moss, UK, DAY 18
Jen Moss, UK


Christine Wilson, UK, DAY 19 
Christine Wilson, UK


Sheryl Bishop, USA, DAY 20
Sheryl Bishop, USA


Diwakar Rawat, India, DAY 21
Diwakar Rawat, India


Jan Petrie Procter, UK, DAY 22  
Jan Petrie Procter, UK


Kelli Schrag, USA, DAY 23
Kelli Schrag, USA


Sharon Harris, UK, DAY 24
Sharon Harris, UK


Lori Pierce, USA, DAY 25
Lori Pierce, USA



Alexandra Marler, UK, DAY 26
Alexandra Marler, UK


Sarah Jatto, UK, DAY 27 
Sarah Jatto, UK


Patti Pascucci, USA, DAY 28
Patti Pascucci, USA



Wyatt the Warrior, USA, 29th June, World Scleroderma Day
Wyatt The Warrior, USA
 

Anne Mawdsley, UK, DAY 30
 

#SclerodermaFreeWorld #RaynaudsFreeWorld #SclerodermaAwareness 

#RareDisease #Hope #Belief

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      


   




An edited version of this article was published here, in my Column with Scleroderma News. 
June 2017. 

 


  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', 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    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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    


  

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

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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, 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     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

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

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 

  

  
Last Update: Feb 2020.       



Patient Profiles Campaign Index  
Scleroderma Awareness Month 2017 









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