Friday, 14 December 2018

Celebrating 20 years at the Scleroderma Unit, The Royal Free Hospital, UK. Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease.

Celebrating 20 years at the Scleroderma Unit,
The Royal Free Hospital, UK. Nicola Whitehill.
Scleroderma, Raynaud's, Autoimmune Rare Disease.



#RaynaudsFreeWorld #SclerodermaFreeWorld
 
Sept 2017
This week, I am celebrating my 20th year since first having dragged my ‘tin man body’ to the world leading expert center, the Scleroderma Unit at The Royal Free Hospital in London, UK.

The previous year, at the time of my initial diagnosis in September 1997, I was told that I had a 15month prognosis, due to the aggressive attack, which the diffuse form of the disease, was having on my body. 

I was also told that there was no cure, with treatments targeting symptom suppression in a ‘hope for the best’ kind of way. The treatments used being steroids, chemotherapy and immunosuppressants. 

During the year following having first heard those life changing words ‘You have scleroderma’, I took all of the standard treatments used, in an attempt to suppress the disease activity. 

By December 1998, I was in a very bad way. My body was stiff, weak, in constant excruciating pain, and my skin was extremely tight. 

 

I was then started on a new medication regime which included 3 iv Cyclophosphamide infusions, along with mycophenolate mofetil (MMF) tablets.  

Thankfully, my name was removed from the Stem Cell transplant waiting list.  

A daily dose of 2g MMF for 5 years stabalised my symptoms. This was stopped in March 2004, upon my achieving my personal career goal of being a practising barrister.  

I am now 14 years chemotherapy / immunosuppressant free. I take Bosentan for my Raynaud’s and control my GI symptoms with a strict Diet.  

 


In November 2016, I was delighted to hear Prof Chris Denton advise me that my skin is cured from scleroderma.   

Prof Denton and I, Sept 2017

I am eternally grateful to Prof Chris Denton, my other dream team members and ultimately, the NHS for keeping me alive.   

Raynaud's world trailblazer, Dr Kevin Howell and I, Sept 2017

Dr Hannah Sykes, Consultant Rheumatologist Southport Hospital, and I, Aug 2017

I know that I am a ‘lucky’ scleroderma patient. 

Lucky, in that, I have minimal internal organ damage. Lucky, in that, I continue to survive.  

Albeit, my full time job is looking after, and respecting my symptoms. I am super mindful to avoid any situations which will exacerbate a flare in my symptoms. 

Prevention is better than cure, as, there is no cure, yet.  

Hottest day of 2013 - I need to wear Ugg boots and gloves.
  
Over the years, I have been privileged to have become an advocate on the global stage for raising awareness of scleroderma, Raynaud's and rare diseases as a whole. 
 
Several highlights include: 

BBC radio interview 2013. I include my coping details for living with such a life changing diagnosis.  

Global feature, The Daily Mail, 2013.   

Presentation the British Society for Rheumatology annual conference 2015. 
 
Presenting at the European Parliament, 2015. 

 

Rare Disease UK parliamentary reception 2016.  


My Column with Scleroderma News. 

I am honored to have become a patient research ambassador with the National Institute for Health Research, earlier this year. video

I have recently been added to their 'Hall of Fame' article.  

Medical Research provides immense hope for #SclerodermaFreeWorld and #RaynaudsFreeWorld

Recently, I was appointed a Patient Public Voice on the NHS England CRG for Specialised Dermatology

I am delighted about this new role. This is in addition to my NHS England CRG Specialised Rheumatology role, and my patient expert roles with the European Medicines Agency

However, my 'tin man' body, along with chronic fatigue and mobility challenges, remain constant sources of frustration

This year in particular, has been quite challenging for me with my scleroderma 'added extra' complications such as skin cancer, dental issues, calcinosis and index finger ulcer.  
 
During my global patient profile campaigns for Scleroderma Awareness Month in 2017 and 2018, every patient said that Raynaud’s and digital ulcers were continual problems for them. 

Other unmet clinical needs that patients have in common include:
Overall, for optimal patient care, the following are essential:


I'm living the dream, scleroderma style, with eternal gratitude to the world trailblazer superhuman Prof Chris Denton, my medical dream team and my non medical dream team. 

 

'Attitude is everything, so pick a good one, to help you through this abyss'. 

Follow: 

Facebook: Raynauds Scleroderma Awareness — Global Patients
Twitter: @SclerodermaRF and @RaynaudsRf
Use the hashtags #SclerodermaFreeWorld and #RaynaudsFreeWorld.  



Please donate to help fund medical research at the Scleroderma Unit of the Royal Free Hospital, London. 

One-hundred percent of raised funds will be used for medical research purposes only. Thank you.  

Please consider leaving a Gift in your Will, for medical research at the Scleroderma Unit. Thank You. 

 


Living the dream, scleroderma style. 




An edited version of this article was published here, in my Column with Scleroderma News. December 2018.   
 
 
To read my articles: 
 
Raynaud's
 
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  
 
To read My ‘Invisible Disability’ experience, Click here  

  


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


SCLERODERMA:

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- 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. 

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 Index, 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    

Becoming a Patient Research Ambassador for the NIHR, 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     

Research is the key. Abstracts from 2016 World Congress, Click here

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   
Preamble - here
 
 
RARE DISEASE DAY:
The theme to this year's Rare Disease Day is 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.
 
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, 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  
 
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, 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).

Where, investment in medical research is crucial, to improve the day to day reality, as well as, the long term outlook for the entire global scleroderma community.  

Follow: 

Twitter: @SclerodermaRF  @RaynaudsRf  
 
 
#SclerodermaFreeWorld           #RaynaudsFreeWorld
#IamScience


 
   
#SclerodermaFreeWorld #RaynaudsFreeWorld 

 

December 2018. 
 
Celebrating 20 years at the Scleroderma Unit,
The Royal Free Hospital, UK. Nicola Whitehill.
Scleroderma, Raynaud's, Autoimmune Rare Disease.



#RaynaudsFreeWorld #SclerodermaFreeWorld