Sunday, 12 June 2016

DAY 12: Nicola Whitehill, 1997 diagnosed with diffuse systemic sclerosis (scleroderma), aged 24. Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease

DAY 12: Nicola Whitehill 
Scleroderma Awareness Month 2016 
Raynaud's, Autoimmune Rare Disease 



Wehoo,….. as the image shows – today is my birthday, and how delighted I am, that I have made it to 43, 17 years post my initial medical prognosis expiry date.

I am eternally grateful for the super human, amazing Prof Denton whose medical expertise and care, helped me realise my childhood dream of becoming a barrister in 2004, 7 years post diagnosis, and whilst taking 2g daily chemotherapy and immunosuppressants.

Although I am no longer able to perform the physical requirements of the barrister role due to scleroderma, I feel extremely honoured that I made it, despite all of the odds against me, to become a female practising barrister in the UK.

I know that this would not have been possible without the support of the scleroderma unit at the Royal Free hospital, andso I have set up a just giving page for Prof Denton’s research fund, as a way of saying thank you. 

Please donate to help fund research for a cure, Click here

or, if in the UK, text:    SURF 97   to 70070

I have transferred my professional qualifications and skills to the global scleroderma patient best practice of care arena. I am an expert adviser to NHS England, The European Medicines Agency (EMA), The British Society for Rheumatology (BSR), European Rare Diseases Organisation (EURORDIS) as well as, I sit on the Best Practice Rare Disease Advisory council, and, I have my column/blog with scleroderma news.
 
Since I am under self imposed house arrest most of the time, due to my symptoms, social media and the internet have become a huge lifeline for me. I have the ‘Raynauds Scleroderma Awareness global patients’ facebook page, as well as, I help Kelli with the ‘Healing Loving Scleroderma with Real Food’ facebook page.  


Although my dream of working at The Old Bailey being a warrior of justice has had to be ‘tweaked’ due to scleroderma, if the UK Parliament is sitting, I make it a date with myself to be watching Prime Minister Questions every Wednesday at 12pm. Even my dogs get involved by sitting with me on the setee!

On Wednesday 2nd March I had the pleasure of attending the RareDiseaseUK Reception for Rare Disease Day at the Houses of Parliament. This event is most definitely one of my few patient highlights of the last 19 years. I blogged about it, Click here   

It really was an awesome feeling for me, to be arriving at the House of Commons on a Wednesday, when Parliament were sitting, just before midday. However, the whole event took weeks of preparation on my part prior, to ensure stamina levels, in addition to the couple of weeks I had to rest for, afterwards.  

At the Reception, I had the pleasure of meeting with other rare disease patient advocates as well as the chair of the All Party Parliamentary Group (APPG) for rare, genetic and undiagnosed conditions, Ben Howlett MP, who further to much pestering from me, will kindly, raise a scleroderma, rare disease related question to the Department of Health on July 5th in Parliament, in honour of World Scleroderma Day 29th June 2016. 

Which leads me on to another highlight of my patient experience of the last 19 years- presenting at the European Parliament on World Scleroderma Day 2015.

Eleven years after I had last appeared in court, wearing my robes. At that time, in 2004, I did not know if I would still be around eleven years later, andso to be around, and, at the European Parliament was a huge honour for me.

Unfortunately, the travel for this trip was a harsh reminder as to why I no longer travel abroad, for I spent the remainder of the summer in my bed, recovering.

To view the full presentation, Click here


More recently, I had the huge honour to co-present a Webinar for Rareconnect, on How to Start an Awareness Day, Click here


It took me until 2013, 16 years post diagnosis before I came out of the scleroderma closet to share with the world what had happened to me and the reality of this diagnosis.


I know that I am a lucky scleroderma patient in the whole scheme of things, which is why I am compelled to use my qualifications and skills to improve the scleroderma patient landscape, as well as the rare disease patient landscape. 

Here is the link to my personal experience survival guide, Click here

And, in the meantime, carry on living the dream, in the hope for a cure.  





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

To read my 2018 Update, Click here 

 

Current Unmet Clinical Needs 2018: 

CALCINOSIS, Click here  

GUM RECESSION, TOOTH EXTRACTS, Click here 

SOFT TISSUE, ULCERS, Click here  

TELANGIECTASIA, Click here 

SCLERODACTYL HANDS, Click here   

INVISIBLE DISABILITY, Click here 

RAYNAUD'S, Click here 

GASTROINTESTINAL, Click here



Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
  
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here  
Global Patient Profiles Campaign Index, Click here
Importance of Medical Research and Awareness Raising, Click here
NIHR Video: 'My Experience of Clinical Trials', 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 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

All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 


Early Diagnosis 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

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, Click here   
This year, 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. 
I am truly humbled and inspired by their work ethic. 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
For latest updates follow: 
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
Living the dream, scleroderma style.  
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.
#HOPE 

Last Update: June 2018


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