Sunday, 2 December 2018

My Scleroderma and Chemotherapy Experience. Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease.


My Scleroderma and Chemotherapy Experience. Nicola Whitehill.
Scleroderma, Raynaud's, Autoimmune Rare Disease.

#SclerodermaFreeWorld #RaynaudsFreeWorld
 
At the start of December, I will be celebrating my 20th year since first dragging my tin man body, to the Scleroderma Unit at The Royal Free Hospital in London, UK.  

Sept 2017

The previous year, at the time of my initial diagnosis in September 1997, I was told that I had a 15month prognosis, due to the aggressive attack, which the diffuse form of the disease, was having on my body.

I was also told that there was no cure, with treatments targeting symptom suppression in a ‘hope for the best’ kind of way. The treatments used being steroids, chemotherapy and immunosuppressants.

During the year following having first heard those life changing words ‘You have scleroderma’, I took all of the standard treatments used, in an attempt to suppress the disease activity.

These medications included Hydroxychloroquin, Tacrolimus, Cyclosporin, Methotrexate, Prednisolone, Omeprazole, ALL pain killers, Amitryptiline, Gabapentin, and Co-proxamol still remains my painkiller of choice. 

By December 1998, I was in a very bad way. My body was stiff, weak, in constant excruciating pain, and my skin was extremely tight. 

I was then started on a new medication regime which included 3 iv Cyclophosphamide infusions, along with mycophenolate mofetil (MMF) tablets. 

Thankfully, my name was removed from the Stem Cell transplant waiting list. 
 
A daily dose of 2g MMF for 5 years stabalised my symptoms. This was stopped in March 2004, upon my achieving my personal career goal of being a practising barrister. 

I am now 14 years chemotherapy / immunosuppressant free. I take Bosentan for my Raynaud’s and control my GI symptoms with a strict Diet.  

My body is still very weak from the effects of the chemotherapy. I am super mindful that I have a weakened immune system in the process of repair. I avoid being in large crowds to try and not get sneezed or coughed on. 

Any small bug or virus could knock me out for months. I already feel as though I have continual flu due to my scleroderma lethargy!

Thankfully, I no longer have the continual nausea which accompanied my chemotherapy experience, however, my GI symptoms are a continual daily demand. 

My muscles are still very weak, feeling as though I have sprinted around the world and constant exhaustion upon the most basic of tasks eg. having a bath. 

My hair is slowly becoming thicker, but still comes out en masse, and more silver coloured hairs!

In November 2016, I was delighted to hear Prof Chris Denton advise me that my skin is cured from scleroderma. 

I am eternally grateful to Prof Chris Denton and the NHS for keeping me alive.   



As well as my other dream team members.  

 

Dr Howell, Raynaud's world trailblazer
  
Dr Sykes, Consultant Rheumatologist, Southport hospital


My 'tin man' body, along with chronic fatigue and mobility challenges, remain constant sources of frustration, making a full time job, with managing my symptoms.  



This year in particular, has been quite challenging for me with my scleroderma 'added extra' complications such as skin cancer, dental issues, calcinosis and index finger ulcer.   


I know that I am a ‘lucky’ scleroderma patient. 

Lucky, in that, I have minimal internal organ damage. Lucky, in that, I continue to survive. 


Albeit, my full time job is looking after, and respecting my symptoms.  


During the course of my global patient profiles campaign for Scleroderma Awareness Month 2017 and 2018, every patient detailed how Raynaud’s and digital ulcers were a continual problem to them. INDEX    

Other unmet clinical needs, which patients have in common include: 
 
 
I am honored to be a patient research ambassador with the National Institute for Health Research. video.  I have recently been added to their 'Hall of Fame' article .  
Medical Research provides immense hope for #SclerodermaFreeWorld.
Overall, for optimum patient care, 3 hallmarks preside: 
medicaldream team
(expert specialist as the clinical lead).  

 
In the meantime, I continue to remind myself that 'My Job Today is to Simply Get Better', with hope, and my canine diva dream team, as my constant companions.  


October was Raynaud's Awareness Month and my 50 shades of blue 'party trick', time of year.  
Recently, I was appointed a Patient Public Voice on the NHS England CRG for Specialised Dermatology

I am delighted about this role, and I very much hope to be a valued voice. 
This is in addition to my NHS England CRG Specialised Rheumatology role, and my roles with the European Medicines Agency.   
 
Living the dream, scleroderma style.  
 
Follow: 
 
Twitter: @SclerodermaRF  @RaynaudsRf  
 
#SclerodermaFreeWorld           #RaynaudsFreeWorld  

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. Thank You. 
November 2018.  

 


Living the dream, scleroderma style. 




An edited version of this article was published here, in my Column with Scleroderma News. November 2018.   
 
 
To read my articles: 
 
Raynaud's
 
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  
 
To read My ‘Invisible Disability’ experience, Click here  

  


Facebook Page: Raynauds Unit Royal Free Hospital
  
Twitter: @RaynaudsRf 


SCLERODERMA:

To read my articles: 

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    

This year, 2018, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Sept 2017

Prof Chris Denton and I, Sept 2017
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 diagnosing doctor, that I was looking at a 15month prognosis. 
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     

Global Patient Profiles Campaign 2018 Index, Click here

Global Patient Profiles Campaign 2018 Video, Click here   

2018 Scleroderma Awareness Raising and Medical Research, Click here  

Importance of Medical Research and Awareness Raising, Click here  

NIHR Video: 'My Experience of Clinical Trials', Click here    

Becoming a Patient Research Ambassador for the NIHR, Click here    
  
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here 
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here  
Scleroderma Awareness Month Flashback 2016, Click here  
My 2016 Scleroderma Awareness Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here   
 
March 2018 Autoimmune Disease Awareness Month, 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

To view my article 'Why Global Collaboration is Important', Click here     

Research is the key. Abstracts from 2016 World Congress, Click here

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   
Preamble - here
 
 
RARE DISEASE DAY:
The theme to this year's Rare Disease Day is Research
Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
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.
 
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here  

Becoming a Patient Research Ambassador for the NIHR, 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  
 
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, 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).

Where, investment in medical research is crucial, to improve the day to day reality, as well as, the long term outlook for the entire global scleroderma community.  

Follow: 

Twitter: @SclerodermaRF  @RaynaudsRf  
 
 
#SclerodermaFreeWorld           #RaynaudsFreeWorld
#IamScience


 
   
#SclerodermaFreeWorld #RaynaudsFreeWorld 

 

December 2018. 
 
My Scleroderma and Chemotherapy Experience. Nicola Whitehill.
Scleroderma, Raynaud's, Autoimmune Rare Disease.

#SclerodermaFreeWorld #RaynaudsFreeWorld

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