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 
Raynaud's, Autoimmune Rare Disease 

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    

 

#SclerodermaFreeWorld #RaynaudsFreeWorld 
June 2017. 

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      

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     
 
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       


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   

Rare Disease Day 2016     

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

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. Thank You. 
#HOPE 


 

Last Update: April 2018 

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