Thursday, 28 February 2019

Rare Disease Day 2019: Bridging Health and Social Care. Leaving a Legacy Gift by Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease.

 
Rare Disease Day 2019 Theme: Bridging Health and Social Care
Leaving a Legacy Gift by Nicola Whitehill
Scleroderma, Raynaud's, Autoimmune Rare Disease.


Recently, I celebrated my 20th year anniversary of being a patient at the Scleroderma Unit, The Royal Free Hospital.

At that time, December 1998, I would never have believed that this was going to be possible. This was the first time of having dragged my ‘tin man’ body, to the Unit. And furthermore, I would not have believed that I would eventually out-survive both of my parents, due to my aggressive symptoms. 

The previous year, my local rheumatologist diagnosed me with the rare autoimmune disease, scleroderma. A year of taking immunosuppressants and chemotherapy followed, with no clinical effect, other than intolerable side effects. 

In December 1998, I transferred my medical care to the world class expert centre, the Scleroderma Unit. I was inspired by the global scleroderma trailblazers Dame Professor Carol Black and Professor Chris Denton. I am eternally grateful for their expertise and support, especially during my initial years, and without whom, achieving my personal goal of becoming a barrister / professional advocate, would not have been possible. 

My experience shows that an early diagnosis is paramount in an attempt to prevent potential life threatening damage, and that a well-resourced and funded expert centre is therefore paramount to best patient care.  

Ever since first having heard those life-changing words ‘You have scleroderma’, I have thought about my mortality, daily. This was heightened during the time of taking various infusions in an attempt to suppress the disease activity. I was forced to delay my goal by a year, as I was wired up to a drip at the time of my scheduled examinations. But in July 2001 I was ‘called to the Bar’ at Gray’s Inn, London, and I am truly grateful to the Unit for helping me achieve this.

In March 2004, I completed my training and studying and became a qualified barrister. In the back of my mind however, I was unsure as to how long I could keep the scleroderma away, and at a manageable level.  Yet in November 2016, Professor Chris Denton told me that ‘my skin was cured from scleroderma’.  

There is still currently no known cure for scleroderma, with little knowledge of its cause. Due to the low incidence in patient numbers (scleroderma being a rare disease), it is crucial that resources and funding are found so that medical databases are compiled to provide valuable research data and information. The Royal Free Scleroderma Unit keeps a database of patients to look for and identify common features in patient data.


As a passionate supporter, I have started to think about how I can best support the Scleroderma Unit and help it when I am no longer here. I browsed the information on the many ways in which the Royal Free charity helps supports the work of the Royal Free Hospital and the Scleroderma Unit on the charity website.

I contacted the Charity and they sent me a very easy to read booklet about making my Will.  This booklet has helped me to understand the importance of doing this, as well as helping to inform me about the easiest and most convenient ways for me to do so. This booklet is available for free by contacting and asking for the Legacies Manager at the Royal Free Charity or by sending an email to: rf.legacies@nhs.net      


To Read My Articles:

Rare Disease Day
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:
 
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


March 2018 Autoimmune Disease Awareness Month, Click 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. Thank You. 

  

  
 
Last Update: February 2019.

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