Tuesday, 11 April 2017

Living the dream, BEing Your Own Raynaud's, Scleroderma, Autoimmune, Rare Disease Patient Advocate - Nicola Whitehill

Living the dream, BE-ing your own Scleroderma,
Raynaud's Autoimmune, Rare Disease Patient Advocate.
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld 

 blog.raynaudsscleroderma.co.uk  


Nicola Whitehill (diagnosed in 1997, aged 24) and the Dream Team

Living with a rare disease brings along many challenges, not least, becoming an expert in your own medical condition. 

The rare disease patient’s holy grail is to actually receive a diagnosis, whereby a treatment care plan can then be put together, which at best, will be focussed on symptom suppression, since there is no known cure. 

I have always considered myself to be a ‘lucky scleroderma’ patient in that, I have minimal internal organ damage, with my Gastro-Intestinal system and my Musculo-Skeletal systems taking the biggest hit. 

Read more, Click here 


I detail more of my 'tin-man' like symptoms, here

My diagnosing Doctor told me back in 1997, that I would be in a wheelchair by Christmas (3 months away, at that time), I was looking at 15 months as a prognosis, and to give up my idea of being a barrister (professional advocate). 

He then prescribed me a cocktail of immunosuppressants and steroids. 

I describe more about this, here

 
A year later, I changed my medical care to that of the global expert and trailblazer Prof Chris Denton at The Royal Free Hospital in London, and almost 18 years to the day from when I first dragged my painful, stiff, swollen body there, Prof Denton confirmed to me that my skin is now cured from scleroderma.  Read more here

In 2015 I presented ‘Systemic Sclerosis – the patient’s perspective’ at the annual British Society for Rheumatology conference. To view the presentation, Click here 





However, it really is a full time job to manage my symptoms, with me using all of my ‘spare time’ devoted to the Raynaud's, scleroderma, autoimmune, Rare Disease, awareness plight.

I have now been writing my column at Scleroderma News for a year. 
 


I receive no payment for my articles and set up my 'Just Giving' page, in the hope to generate funds specifically for medical research at the Scleroderma Unit led by Prof Chris Denton – to whom I am eternally grateful to, for his medical expertise and superhuman approach, to being of service to his patients and the global scleroderma community.


As I detailed and set out at the start of my Column last year, it was, and still remains my intention to make the content of my articles educational and informative, from not just the raynaud's scleroderma patient perspective, but also from the rare disease patient’s perspective in general, combined with being a voice for patients by presenting the true reality of our daily experience when living with this body hijacker. 

I very much hope that I have achieved this with the content of my Column, as well as, with the content of this article.

During the first few years of having been told those 3 words, ‘You have Scleroderma’ I was not overtly fluent at speaking about the disease, and was more focussed on having my head in law books so that I could pass my exams. 

I would occasionally give radio interviews or magazine interviews, usually further to the persuasion from Anne Mawdsley, the Founder and President of the Raynaud's and Scleroderma Association, as it was then. 

Sadly, Anne is no longer with us, having lost her battle with Raynaud's and scleroderma in 2014 after 30 years of living with the diagnosis. 


Anne Horton Mawdsley, campaigner and fundraiser, born 31 May 1942; died 12 October 2014

The entire global Raynaud's and scleroderma community are extremely grateful to Anne for her tireless fundraising and awareness raising, and for all that she did to improve the lives of patients with this disease. 

Last year, I started my ‘Raynauds Scleroderma Awareness Global Patients’ Facebook page, in Anne’s memory. The Facebook Page is linked with this blog.



During the summer of 2013 my 'incognito' status came to a sudden end, by way of me sharing my 'tin-man' like symptoms.

Although this aspect to scleroderma puts me under house arrest, along with my Raynaud’s super-sensitivity, I have been actively following and participating in the work of the APPG on Rare, Genetic and Undiagnosed conditions here in the UK, chaired by Ben Howlett MP.

 
Nicola Whitehill, Ben Howlett MP, Dr Larissa Kerecuk
 


This photo was taken last year, at the Rare Disease UK Parliamentary reception for Rare Disease Day 2016. It still remains a favourite and honour for me to have been in such good company. 
 
Dr Larissa Kerecuk is a true superhero. She is the Rare Disease Lead at Birmingham Children's Hospital. 

Nicola Whitehill, Ben Howlett MP

I wrote about the day, here 

I have taken part in several live Twitter sessions, using my @cosmicfairy444 alter ego, which Ben and Rare Disease UK have hosted live.





In essence, the golden hallmarks for the rare disease optimum patient care are: 







supported by a medicaldream team’ 
(expert specialist as the clinical lead).
  

Speedy access to innovative medicines to prevent life threatening damage  


The  UK Rare Disease Strategy sets out further details.

28th March 2017, was a very encouraging day for the UK rare disease community. 

Following a debate led by Ben, Philip Dunne MP, Minister of State for Health has announced that NHS England will develop an implementation plan, by the end of the year, as to its commitments as outlined in the strategy.

To read the full transcript of the debate, Click here

To watch the televised recording starting at 16.25, Click here   



 





I highlighted the importance of the strategy, here, within one of the articles which I wrote for Rare Disease Day 2017, the theme being 'Research - possibilities are limitless'. 

I focussed on the 'Raynaud's scleroderma patient unmet research needs', here, within my second article, for honouring Rare Disease Day 2017.




 



  


March is Autoimmune Disease Awareness Month #ADAM  



 




 



 


All in all, on a day to day level, every rare disease patient is co-erced in to a world where being their own advocate is not a choice, it is a necessity for survival and improvements. 



 




Nicola Whitehill 30.11.16 'My skin is cured from Scleroderma', Royal Free Hospital




An edited version of this article was published here, in my Column with Scleroderma News. April 2017. 




  

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: Leaving a Legacy Gift, 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. 


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.       



Living the dream, BE-ing your own Scleroderma,
Raynaud's Autoimmune, Rare Disease Patient Advocate.
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld 

 blog.raynaudsscleroderma.co.uk  









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