Saturday, 15 April 2017

My Skin Is Cured From Scleroderma - Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease


My Skin Is Cured From Scleroderma - Nicola Whitehill 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  




'My Skin Is Cured From Scleroderma' 30.11.16 

Almost 18 years to the day, from having first attended the Scleroderma Unit  at The Royal Free Hospital in London, I am exhilarated to have been told on 30th November 2016, by the world scleroderma expert, Prof Chris Denton, that ‘your skin is now cured from scleroderma’.    




Having been given a 15 month prognosis by my medical diagnosing doctor in autumn 1997, aged 24, in December 1998, I arrived at Dame Prof Black and Prof Denton’s office at the Royal Free hospital in a very bad way. 

My body had turned to stone, literally. 

The skin covering my entire body had become tight, itchy and painful. In an attempt to put this into words, it would be similar to a clothing garment shrinking in the washing machine. 

This was accompanied by swollen joints and weak muscles, making any physical exertion, including standing, a huge feat. 

My fingers and toes were constantly blue with a minimum of 4 digital ulcers at any one time. 

Along with a level of tiredness that I had never experienced before (even after a week holidaying in Ibiza post A-levels, did not make the slightest level of comparison). 
 




Following extensive and numerous medical tests, the good news was that minimal internal organ involvement was evident. 

However, the progression and aggressiveness of the fibrosis and lack of elasticity of my skin and connective tissue placed me in the ‘diffuse systemic sclerosis critical patient’ list. 

An urgent medical treatment plan was drawn up with numerous iv cyclophosphamide infusions scheduled, which if ineffective, I would have a stem cell transplant. 

The feeling of leaving the hospital that day, is one that I can not articulate other than an overwhelming inner-sinking feeling, having to consciously force myself to breathe. 

This feeling was comforted by the knowledge that, I was now under the medical expertise of global leaders in their field, whose dedication and commitment to improving the scleroderma patient landscape, invoked huge hope in me, that a cure would be discovered within my lifetime. 

And most of all, they would ‘pull out all of the stops’ to do everything they could to help me, and of extreme importance to me, help me to realise my childhood dream to be a barrister.

My new medical team took no time in getting me hooked up to the chemo drips, I had two sessions before the Christmas holiday, which was repeated at the start of 1999. 

At the same time I was taking mycophenolate mofetil (mmf) 2g / day. 

By easter, my skin symptoms gradually eased, taking me out of the stem cell transplant list.

On 1st March 2004 I qualified as a self employed practising barrister, andso, having achieved my personal life goal, I reduced the mmf dose with view to stopping it completely. 

By the end of June, I was back on my sofa, experiencing a relapse with my symptoms, mainly lethargy, intense musculo-skeletal pain (tin man) and neuralgic pain. 

Six months later, I relocated to my birth town of Southport, with the management of my symptoms to a tolerable level, now taking over as my full time job.

Digital ulcers used to be my nemesis until taking Bosentan 125mg twice a day, continuous since October 2012. 

Due to my Raynaud’s sensitivity, I have found that the prevention of attacks is far less painful, than having an episode. 

This makes for a ‘home bird’ all year round. 

Again, words are difficult when trying to describe a Raynaud’s attack. 

‘Slamming your hand in the car door’, I would suggest, is an acceptable description, however, the pain can not be articulated.

If I am honest, 18 years ago, I would never have believed, (given the medical advice which I had been given, combined with how I was feeling, and what was happening to my body at that time), that I would still be alive, let alone, be told that my skin would be cured from scleroderma. 

I do not want to appear to be morbid, just honest, about my reality at that time.

Again, I struggle to allocate accurate words, when trying to describe the level of gratitude and appreciation I have for Prof Denton and the Scleroderma Unit team at the Royal Free Hospital. 

I am also extremely grateful to my local medical team here in Southport, Dr Sykes and the rheumatology team, as well as, Dr Bontea and the dermatology team at Ormskirk hospital, and of course my dentist, Andrew Booth and hygienist Louise.

As a long term scleroderma patient, my main health challenges now include, extensive calcinosis, telangiectasia, dry mouth / gum recession, chronic MSK pain and Raynaud’s. 

I have stabalised my gastro-intestinal symptoms by altering my diet and including daily smoothies and fresh juices for maximum super food nutrition. 

However, this combination of my current unmet clinical needs, most certainly shows that scleroderma is more than skin deep, causing devastation to the vascular and soft tissue / connective tissue processes along the way.
 
I have written about the Scleroderma Olympian and overall diagnosis

All in all, I am more than aware, and I am extremely humbled to know that I am a very lucky scleroderma patient, in relation to the ‘mild’ set of symptoms which I experience, compared to some of my fellow patients, who are far braver than I.

Click here, to view my article 'Living the dream, being your own Scleroderma, Raynaud's, Autoimmune Rare Disease Advocate'.

One day, hopefully, very soon, I want to be able to say ‘I used to have scleroderma’. 

So, until that day, I will continue to relish in the delight of how I feel, knowing that ‘my skin is cured from scleroderma’. 




An edited version of this article was published here, in my Column with Scleroderma News. 
December 2016. 



  

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      
  
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.  


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

  

  
Last Update: Feb 2020.       


My Skin Is Cured From Scleroderma - Nicola Whitehill 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  












 


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