Sunday, 30 December 2018

Christmas Holiday Wishes and a New Year to Celebrate. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.


Christmas Holiday Wishes and a New Year to Celebrate.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld #SclerodermaFreeWorld


The seasonal festive holiday time is almost here. 

My little dream team are getting in the festive spirit by wearing their Christmas jumpers. 

  

Video 

As patients living with a chronic debilitating, autoimmune rare disease, we know all too well that, there is no holiday from our day to day reality. 

Managing the numerous and complex symptoms makes for a full time job.   

Sept 2017


Recently, I celebrated my 20th year since first having dragged my 'tin man' body, to the Scleroderma Unit at The Royal Free Hospital in London, UK. 

I am hugely grateful to Dame Prof Carol Black, Prof Chris Denton and the NHS, for keeping me alive

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.  


My wish at that time was to achieve my personal career goal of becoming a barrister, a 'Learned Friend'.   

Graduation photo July 2001
This photo was taken when I was 'called to the Bar' at Gray's Inn in July 2001. 

This was further to my postgraduate diploma in law and a year spent at 'Bar School'. 

I then had to shadow several barristers to complete my 'hands on' training. I am eternally grateful to the late Ross Fitzpatrick (Mungo) and David Herbert QC for their learned Counsel and friendship during this time.  
1st March 2004, further to 7 years of treatments (chemotherapy and immunosuppressants), whilst studying and training, my wish was granted. Prof Denton was extremely supportive throughout this time, helping me achieve my then wish.


I am now 14 years chemotherapy / immunosuppressant free. 

I take Bosentan for my Raynaud’s and I control my GI symptoms with a strict Diet.  

Over here in the northern hemisphere, the season of winter has arrived.  


Winter really is my nemesis time of year. 'House arrest' is my only option, in an attempt to minimise my Raynaud's flares.  Prevention is better than cure. Infact, prevention is crucial, since there is no cure. Video.

However, I know that for my fellow patients, Margie, living in the southern hemisphere, this is their favorite time of year! Sadly, RIP my lovely friend Silvana.   

By the time winter sets in, I am constantly cold. This is accompanied with continual, relentless exhaustion, lethargy, and pain, causing immense frustration.   



However to look at me, people kindly tell me, "you look so well". 

I wish that my body could feel warm all year round. Unfortunately, I must wear Ugg boots and gloves on the most hottest of days, in an attempt to prevent a Raynaud's flare.   

Hottest day of 2013


This year, 2018, has been particularly challenging for me due to extra complications such as skin cancer, dental issues, calcinosis, and an index finger ulcer

I am still fragile from having started the year with shingles.  

These unmet clinical needs were replicated during my global patient profile campaigns for Scleroderma Awareness Month 2017 and 2018. 

Telangiectasia, Sclerodactyl hands and  Gastro Intestinal issues were also common symptoms, amongst patients.   
For optimal patient care, the following are essential:

All I want for Christmas is for my Christmas / daily wish: a 'SclerodermaFreeWorld' and a 'RaynaudsFreeWorld', to be granted,.  

Medical Research provides immense hope for this wish to be granted.   

Now that I am blessed to be a long term scleroderma survivor / scleroderma Olympian, I spend most of my spare time when not attending my symptoms, committed to the 'SclerodermaFreeWorld' and 'RaynaudsFreeWorld' wish.

This year, I am honored to have become a patient research ambassador with the National Institute for Health Research. video'Hall of Fame' article.   
 
Recently, I was appointed a Patient Public Voice on the NHS England CRG for Specialised Dermatology
This is in addition to my NHS England CRG Specialised Rheumatology role, and my patient expert roles with the European Medicines Agency.   
    

Since this is my last article for my column this year, I very much want to wish you a fairy happy Christmas holiday time, and a most prosperous 2019, feeling good. 

Thank You for sharing the same daily wish in 2019: 

'SclerodermaFreeWorld' 

'RaynaudsFreeWorld'.   

2019 is already looking to be a very busy year with exciting times ahead, for this wish to be granted.   

Living the dream, scleroderma style. 


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. 
 
Christmas Holiday Wishes and a New Year to Celebrate.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld #SclerodermaFreeWorld



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