Sunday 15 March 2020

Raynaud’s Scleroderma Association Newsletter Autumn 2015 Patient Story: Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease

Raynaud’s Scleroderma Association Newsletter Autumn 2015
Patient Story: Nicola Whitehill 


Nikki has scleroderma, but she doesn't let it stop her:

In 1997, aged 24, I was diagnosed with the autoimmune disease diffuse systemic sclerosis and Raynaud’s phenomenon.

At that time, I had graduated from Aston University with BSC (Hons) in Applied and Human Biology and I was working as a medical representative in Nottingham whilst studying for a postgraduate diploma in Law, with view to realising my childhood dream of being a barrister.

I was advised, medically, that I had a 15 month prognosis as there was no cure and, more devastatingly to me, to give up on my dream.

I was prescribed powerful disease modifying agents and left to hope for the best.

Six months passed, and my disease was becoming more aggressive than ever, with my body feeling as though it was turning to stone with the stiffness and constant pain.

I therefore decided to seek a second opinion from one of the World’s leading experts on the diagnosis, Professor Black in London.

Within 30 seconds of being in her company, I knew that she wanted to help me get better and, of huge importance to me, she wanted to help me realise my dream.

I was started on a very intense cytotoxic treatment plan, which subjected me to numerous IV chemotherapy drips in combination and followed up with high doses of immunosuppressants.

My only other option was a stem cell therapy transplant, and I really did not like the idea of this.

My IV infusions commenced a few days before Christmas 1998 and, Christmas for me that year, was spent in my bed at my parents house, feeling very, very sick.

By the following Easter I had made a slight improvement with my symptoms but was unable to sit my Law exams, meaning that I had to drop back a year.

I was wholly devastated about this, as this was another year added to the timescale of me achieving my dream job.

Unfortunately, by now, my hands had become extremely painful and stiff, making it very difficult for me to hold a pen and further to my Consultant, who was now Prof Denton, very kindly, writing a medical letter in relation to the disability which I was experiencing due to my diagnosis, I was given my own room, a keyboard and extra time to sit my exams.

Thankfully, I responded well to the medication and finally passed my postgraduate exams in the summer of 2000, handed in my notice as a medical rep, and started Bar School (the academic training required to be a barrister) in the September.

I was elated that my dream was back on track, even though I had to spend every spare moment when I was not studying in my bed, having to rest and be respectful of my symptoms. In July 2001 I was called to The Bar at Gray’s Inn.

However, I now needed to complete my vocational training by way of completing a ‘pupillage’- the ‘apprenticeship’ part of being a barrister, with places extremely limited and few and far between.

I started working with an in-house barrister and finally started my pupillage in September 2003.

Prior to the commencement of my pupillage, Professor Denton very kindly wrote a letter to my barrister mentor, explaining the nature of my diagnosis and how it would be best managed in the work place, concluding that my diagnosis should not prevent me from working, should the correct procedures be in place to assist me.

On the 1st March 2004, I appeared at Nottingham Crown Court in my wig and gown as a self employed practising barrister.

I was ecstatic that my dream had been realised along with my disease symptoms now being at a manageable level.

It was then decided to decrease the daily dose of immunosuppressants, which I had been taking for the previous 5 years, with view to stopping the medication entirely.

Unfortunately by the end of June 2004 I experienced quite a severe relapse in my symptoms, prompting me to have to stop working and relocate to my family hometown of Southport.

At this time I was hugely disappointed that my body was not well enough to perform my 60 hour a week job as a barrister.

However, I felt so ill by way of having pushed myself for the initial first few years of the diagnosis, that it then took me six years to establish a daily routine to manage my symptoms, and begin to see a reversal of some of them.

Throughout all of this time, Professor Denton has been of huge support and comfort with my progress, not only by my regular twice a year check ups, but also by the support given to allow me to manage my disease at a local level with the local medical professionals.

This ‘shared care’ team approach has been crucial for the success that I see with the management of my disease to this day.

My diagnosis is multi complex requiring me to have a team of medical professionals helping with my return to well being, with Professor Denton in London as the Conductor.

I am also extremely grateful to my local Rheumatologist, Dr Sykes, for not only agreeing to assist with my shared care, but also for recognising in me, (which at that time I had totally forgotten about due to feeling so ill), some of the skills which I had acquired, and which could be used to help educate others about the disease.

I was invited to give annual presentations to the new intake of doctors covering their rheumatology rotation, as well as sit as a test exam patient for the Liverpool Medical School’s Locas exams (Doctor qualification).

I very much enjoyed this interaction, using my skills acquired as a professional advocate, and I was driven by the hope that an early diagnosis, due to the immediate recognition of the symptoms, would help a new patient.

My General Practitioner, Dr Hughes, has also been crucial with the smooth running of my return to well being.

The years of chemotherapy and immunosuppressants have left me susceptible to frequent, common infections which requires intervention from primary care as well as my local pharmacist.

Since my diagnosis also affects my mouth by way of causing gum recession and tooth infection, I am also very grateful to my dentist, Mr Booth, and dental hygienist, Ms Doran, for their expertise in helping me manage these symptoms.

The combination of this multi-disciplinary team approach has enabled me to feel well enough to become more active using my professional skills and qualifications, by way of being a regular volunteer with the charitable organisations for my diagnosis, as well as an expert patient with NHS England; the European Medicines Agency; European Rare Diseases Organisation, and more recently, one of the two patient representatives involved in the National Network of Quality in Primary Care.

In relation to my dreams, I have a new dream now - to be able to say that I used to have the diagnosis of Systemic Sclerosis and Raynaud’s,. In the meantime, I hope to use the remainder of my life helping to illuminate and improve the patient journey, as well as be a pioneer for a cure and better understanding.   

AUTUMN 2015.


#SclerodermaFreeWorld   #RaynaudsFreeWorld   #Research 
#Autoimmune #RareDisease  #LifeChanging

Scleroderma Family Day 2020
25th Anniversary Meeting
The Atrium, Royal Free Hospital, London, NW3 2QG
Chair: Professor Chris Denton
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).


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    


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, 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:  



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#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.       

Raynaud’s Scleroderma Association Newsletter Autumn 2015
Patient Story: Nicola Whitehill 

Raynaud’s Scleroderma Association Newsletter Autumn 2015 Patient Story: Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease

Raynaud’s Scleroderma Association Newsletter Autumn 2015 Patient Story: Nicola Whitehill    Scleroderma, Raynaud's, Autoimmune Ra...