Tuesday, 19 March 2019

Planning for the Future, Nicola Whitehill. AUTOIMMUNE DISEASE AWARENESS MONTH. Scleroderma, Raynaud’s. Rare Autoimmune Disease.


 Planning for the Future – Nicola Whitehill.

 Scleroderma, Raynaud’s: Rare Autoimmune Disease.

AUTOIMMUNE DISEASE AWARENESS MONTH.


Over the last two decades, my condition has enabled me to see first-hand how the Scleroderma Unit at the Royal Free Hospital has developed and grown. The work of,  and support, given by this world-renowned centre of excellence for care of patients with scleroderma and connective tissue diseases are simply exceptional. 

The clinical trial unit is very proactive, which provides me with immense hope that the causes of and a cure for scleroderma will be eventually discovered, and hopefully during my lifetime.

Sadly, I have also lost many friends to scleroderma and I know that I am a lucky scleroderma patient. Lucky, as I continue to survive, and lucky, as I have minimal internal organ involvement. I am sure this is due to me having a relatively early diagnosis and treatment plan provided by the Scleroderma Unit.

For over 20 years, I have lived with the daily uncertainty as to whether my disease would ravish my body to the point that medical intervention is futile. It only follows that any sensible person in my position would sort out their personal affairs.  This has made me think about what my wishes would be, in looking after my loved ones when I am no longer here, and to think about my making my Will, so that I can have peace of mind that my wishes will be followed. 

As a patient, I am immensely grateful for the work and support of the Scleroderma Unit over the last 20 years. As a world leader in its field, the Unit’s input into global partnerships and collaboration is crucial for the advancement of medical research. 

So as well as looking after my loved ones, this is why I am leaving a gift in my Will to the Scleroderma unit. I know that the money will be used to support global medical research into treatments, and eventually a cure for Scleroderma.  I have decided that there is no time like the present, and I have taken advantage of the free Will writing service offered by the Royal Free Charity to make my Will, and to ensure my wishes are fulfilled.

Making my Will could not have been easier. I am extremely impressed with the professionalism of the service which I received from the free and independent Will writing scheme. The whole process was treated with sensitivity and at no time did I feel under any pressure or obligation to rush the process. I chose which firm, and who, I wanted to assist me with the contents of my Will. The local solicitor was efficient and thorough, making the experience a little more comfortable by not drawing out the process.

I feel a huge sense of relief and peace of mind from knowing that my personal affairs will be honoured, as by my wishes, and that the people and causes I care most about will benefit when I am no longer here.  

You can get more information about this free Will writing service from the Royal Free Charity website at: www.royalfreecharity.org or by emailing the Royal Free Charity Legacies Manager at: rf.legacies@nhs.net   


To Read My Articles: 

2019: Leaving a Legacy Gift, Click here   
 
2018: Research.   
 
Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2017 Rare Disease Day Flashback  
 
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.
 
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.   
 
To read my articles:  


This video shows all of the global patients who kindly shared their Scleroderma, Raynaud’s, autoimmune Rare Disease experience for awareness purposes during my awareness campaigns.  

2019 New Challenges, Click here
 
Becoming a Patient Research Ambassador for the NIHR, 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      


Sept 2017

Prof Chris Denton and I, Sept 2017
 
This year, 2019, I am celebrating 21 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 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     
 
 
The annual Family Day at the Scleroderma Unit, The Royal Free Hospital, is taking place on the 18th May 2019. Browse the program, 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 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  
 
To read My ‘Invisible Disability’ experience, Click here  

  


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

 

 
 

 
For latest updates follow: 
 
  
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research
#ADAM #Scleroderma #Raynauds #RareDisease  #RareReality #ShowYourRare 
#RareDiseaseDay   

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. 

  

  
 
 
Last Update: March 2019.


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