Sunday, 30 December 2018

Christmas Holiday Wishes and a New Year to Celebrate 2019. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.


Christmas Holiday Wishes and a New Year to Celebrate 2019. 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

The seasonal festive holiday time is almost here. 

My little dream team are getting in the festive spirit by wearing their Christmas jumpers.  


  


As patients living with a chronic debilitating, autoimmune rare disease, we know all too well that, there is no holiday from our day to day reality. 

Managing the numerous and complex symptoms makes for a full time job.    



Sept 2017


Recently, I celebrated my 20th year since first having dragged my 'tin man' body, to the Scleroderma Unit at The Royal Free Hospital in London, UK. 

I am hugely grateful to Dame Prof Carol Black, Prof Chris Denton and the NHS, for keeping me alive

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.  


My wish at that time was to achieve my personal career goal of becoming a barrister, a 'Learned Friend'.   


Graduation photo July 2001 

This photo was taken when I was 'called to the Bar' at Gray's Inn in July 2001. 

This was further to my postgraduate diploma in law and a year spent at 'Bar School'. 

I then had to shadow several barristers to complete my 'hands on' training. I am eternally grateful to the late Ross Fitzpatrick (Mungo) and David Herbert QC for their learned Counsel and friendship during this time.   
 
1st March 2004, further to 7 years of treatments (chemotherapy and immunosuppressants), whilst studying and training, my wish was granted. Prof Denton was extremely supportive throughout this time, helping me achieve my then wish.


I am now 14 years chemotherapy / immunosuppressant free. 

I take Bosentan for my Raynaud’s and I control my GI symptoms with a strict Diet.  

Over here in the northern hemisphere, the season of winter has arrived.  


Winter really is my nemesis time of year. 'House arrest' is my only option, in an attempt to minimise my Raynaud's flares.  Prevention is better than cure. Infact, prevention is crucial, since there is no cure. Video.

However, I know that for my fellow patients, Margie, living in the southern hemisphere, this is their favorite time of year! Sadly, RIP my lovely friend Silvana.   

By the time winter sets in, I am constantly cold. 

This is accompanied with continual, relentless exhaustion, lethargy, and pain, causing immense frustration.   






However to look at me, people kindly tell me, "you look so well". 

I wish that my body could feel warm all year round. 

Unfortunately, I must wear Ugg boots and gloves on the most hottest of days, in an attempt to prevent a Raynaud's flare.   

Hottest day of 2013


This year, 2018, has been particularly challenging for me due to extra complications such as skin cancer, dental issues, calcinosis, and an index finger ulcer

I am still fragile from having started the year with shingles.  

 


These unmet clinical needs were replicated during my global patient profile campaigns for Scleroderma Awareness Month 2017 and 2018.  



Telangiectasia, Sclerodactyl hands and  Gastro Intestinal issues were also common symptoms, amongst patients. 


Telangiectasia 18.9.18
  
For optimal patient care, the following are essential:

All I want for Christmas is for my Christmas / daily wish: a 'SclerodermaFreeWorld' and a 'RaynaudsFreeWorld', to be granted...  

Medical Research provides immense hope for this wish to be granted.   

Now that I am blessed to be a long term scleroderma survivor / scleroderma Olympian, I spend most of my spare time when not attending my symptoms, committed to the 'SclerodermaFreeWorld' and 'RaynaudsFreeWorld' wish.

This year, I am honored to have become a patient research ambassador with the National Institute for Health Research. video'Hall of Fame' article.   

 

Recently, I was appointed a Patient Public Voice on the NHS England CRG for Specialised Dermatology.  

This is in addition to my NHS England CRG Specialised Rheumatology role, and my patient expert roles with the European Medicines Agency.   
    

Since this is my last article for my column this year, I very much want to wish you a fairy happy Christmas holiday time, and a most prosperous 2019, feeling good. 

Thank You for sharing the same daily wish in 2019: 

'SclerodermaFreeWorld' 

'RaynaudsFreeWorld'.   

2019 is already looking to be a very busy year with exciting times ahead, for this wish to be granted.   

Living the dream, scleroderma style. 


Follow: 

Facebook: Raynauds Scleroderma Awareness — Global Patients 

Twitter: @SclerodermaRF and @RaynaudsRf 

Use the hashtags #SclerodermaFreeWorld and #RaynaudsFreeWorld.  




Please donate to help fund medical research at the Scleroderma Unit of the Royal Free Hospital, London. 

One-hundred percent of raised funds will be used for medical research purposes only. Thank you. 
 
Please consider leaving a gift in your Will for medical research at the Scleroderma Unit. Thank You.   


 


Living the dream, scleroderma style. 




An edited version of this article was published here, in my Column with Scleroderma News. December 2018. 
 
 


  

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.  


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

  

  
Last Update: Feb 2020.       



Christmas Holiday Wishes and a New Year to Celebrate 2019.

Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  












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