Saturday, 29 April 2017

My Job Today Is To Simply Get Better From My Raynaud's, Scleroderma, Autoimmune Rare Disease Diagnosis - Nicola Whitehill

My Job Today Is To Simply Get Better 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  


 

 


One of my biggest challenges of living with the chronic, incurable rare disease, scleroderma and Raynaud’s, is that I am no longer physically able to maintain my professional career as a practising barrister. 

The last time that I wore my court robes, wig and gown, was 29th June 2004 at Leicester Crown Court. 

This date, randomly, some years later, was set as World Scleroderma Day.   



 



 



Thanks to USA patient, Sharon, for this wonderful image

To read my article ‘29th June, World Scleroderma Day 2016’, where I detail the origins of the date, Click here

On the 1st March 2004, I had started to decrease the 2g Mycophenolate daily dose of the previous five years, and by the end of June, I was physically exhausted from pushing my body to perform a 60hour week whilst taking such a high dose of immunosuppressants / chemotherapy. 

I had to accept that my body needed a rest and a change in my lifestyle, if I was to have any chance of getting remotely better. 

I sold my house and re-located to my birth town of Southport, on the north west coast of England, where maintaining my symptoms to a manageable level became, and still remain, my full time job. I wrote about this, here

Sunday nights used to be my worst night, whilst in the abyss of accepting my ‘non-working’ reality. 

Which, is quite ironic really, since when at work, I would sometimes have the ‘Sunday night, pre - Monday blues’, and here I was, wishing for that to be my reality again, missing the ‘old me’. 

It never occurred to me that, one day I would wake up and never get better. 


I would spend days, which turned into weeks, and then months, and years, in agony, barely able to do the most simplest of tasks, whilst the pain of my entire body and lack of sleep as a consequence, dictated what had become my reality.  


Upon my enforced career change to repairing my body, my full attention is dedicated to minimising my symptoms to a tolerable manageable level.  


This is driven by my desire to get better. 


 


Over the course of the last few years, my ‘return to wellbeing’ routine has allowed me to ‘test out’ several adventures, to assess the level of the actual reality of my return to work.

In 2015, I was honoured to present ‘Systemic Sclerosis – a patient’s perspective’ at the annual British Society for Rheumatology (BSR) conference which was held in Manchester that year. 

This was a huge physical feat for me, even though Manchester is only 40miles from Southport. 

Weeks of advance preparation were put into place, along with the three hour routine required to allow me out of the front door. 

Whilst sitting at Southport train station at 6.30am, I thought to myself what a miracle it was that I was sat there! 

Sadly, the experience of the train journey confirmed why public transport is not an option for my tin man body and Raynaud’s sensitivity. Accompanied by several sets of stairs, which are a ‘no-go’ for me.  




To view my presentation, Click here

For more details and to register for Rheumatology 2018 May 1st - 3rd, Liverpool, Click here

To read a synopsis of the Scleroderma sessions presented at the 2016 conference, Click here

Although I very much enjoyed the day and its contents, the entire physical exertion forced me to return to my bed for the next ten days. 

Unfortunately, the ‘ten day’ recovery period still remains a precedent following any ‘big day’ out. I have to be super-organised with managing my time and in particular, any meetings in London, via my roles with the European Medicines Agency (EMA), and, NHS England.   

In 2015 I was honoured to have been a member of the group to present at the European Parliament for World Scleroderma Day, in Brussels.   


 


To view the presentation, Click here  

However, the six week bed rest needed, following the physical exertion of this trip, was a harsh reminder as to why I had not been abroad for over a decade.

To read 'Living the dream - Being your own Scleroderma Raynaud's, Autoimmune Rare Disease Advocate', Click here    


All in all, I have to remind myself that having a job role or status does not define who I am. 

I have shared more of my coping strategies in relation to this, on my personal blog,  cosmicfairy444  


And, for the days when my body is in protest for having pushed myself too much, forcing me back to my bed, I must remember that 

‘My Job Today Is To Simply Get Better’


Living the dream, scleroderma style.

#SclerodermaFreeWorld #RaynaudsFreeWorld



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. 

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.       


My Job Today Is To Simply Get Better 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  













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