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
  


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     




  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 


Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here    





Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2017 Rare Disease Day Medical Research  


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.


To read about medical research at the scleroderma unit, 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).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

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

2019 New Challenges, 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        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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    


  

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, former 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   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.  


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 

  

  
Last Update: Feb 2020.       



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

#SclerodermaFreeWorld  #RaynaudsFreeWorld 

 blog.raynaudsscleroderma.co.uk  

sclerodermarf.blogspot.com  

 raynaudsrf.blogspot.com









No comments:

Post a comment