Thursday, 28 March 2019

Gift In My Will, Nicola Whitehill. AUTOIMMUNE DISEASE AWARENESS MONTH. Scleroderma, Raynaud's, Autoimmune Rare Disease.


Gift in My Will 
AUTOIMMUNE DISEASE AWARENESS MONTH.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#ADAM #SclerodermaFreeWorld  #RaynaudsFreeWorld  #Research 
#RareDisease  #RareReality #Scleroderma #Raynauds

There is currently no known cure for scleroderma, with little knowledge of its cause. Due to the low incidence in patient numbers, as a rare disease, this presents challenges in the conducting of clinical trials. 

Over the past 20 years, I have taken part in several clinical trials at the Scleroderma Unit under the supervision of Professor Chris Denton. These trials are essential to improving understanding of the disease, as well as, the identification of better medicines.
  
I most certainly experienced an improvement in my symptoms as a result of one of these clinical trials.  Sadly, once the trial had completed, I was no longer able to have the drug as it does not have a licenced use for scleroderma, although it is licensed for other conditions. As a double-blind placebo controlled trial, I was not privy to knowing if I had been given the active drug or the placebo dummy.  However, the improvement in my mobility and MSK pain was nonetheless a very clear positive and welcome outcome.

To know that there is a medicinal ‘something’ which could help to improve my symptoms and which, further to more clinical research, may become available to my diagnosis in the future, fills me with hope: hope that my personal daily reality may be improved one day.  And speaking from my own personal experience, I am certain that newly diagnosed patients will almost certainly benefit from future research developments.  

I am immensely grateful to the Scleroderma Unit, Professor Chris Denton, and the NHS for keeping me alive, decades beyond my initial prognosis at the time of my initial diagnosis, and way beyond what I could ever have expected was possible. However, investment in medical research is still desperately and urgently needed to eliminate this very cruel, debilitating, and life changing disease.

There are exciting developments at the Royal Free including expansion of the Institute of Immunity and Transplantation, which includes the scleroderma clinical service.  The new Pears Building and associated expansion of specialist research opportunities offer a concrete example of what is possible with investment and effort and will ensure that cutting edge laboratory facilities are available in the future.

As mentioned in my last blog, I recently decided to write my Will to make sure my loved ones will be looked after when the inevitable finally happens. I also decided to include the Scleroderma Unit at the Royal Free Hospital in my Will because I want to continue to support their world-class, ground-breaking and much needed medical research into scleroderma, and I know that my legacy gift will make a real difference to the work of the Unit. 

Making my Will using the Royal Free Charity’s free Will writing service could not have been easier. I am extremely impressed with the professionalism of the service which I received from the independent service provider. The whole process was treated with sensitivity and at no time did I feel under any pressure or obligation from the Royal Free Charity. I chose in my own time 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 and independent 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:   

Planning for the Future, Click here  

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

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


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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