Sunday, 15 April 2018

Medical Research and Awareness Raising, Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill

Medical Research and Awareness Raising
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  



Spring has reluctantly arrived over here in the UK. An increase in the temperature is most welcome, even if it is only marginal, due to my location!

However, similar to all of my fellow patients around the world, to make it out of winter without any body crisis by way of flare ups or the like, is quite frankly, a miracle.

Even with continual house arrest, commencing in autumn, I have still not managed to escape the wrath of the cold winter months, unscathed.

Winter really is, my nemesis season




This winter, 2017 – 2018, I have had numerous health challenges in addition to my scleroderma and Raynaud’s ‘carte blanche’ symptoms.  

Even after living with this diagnosis for 21 years, it still continues to amaze me with the surprises which it can ‘present’, and not in a good way!

So far this year, my Pandora’s Box of symptoms have included Shingles, my Bowen’s disease skin flare / follow up.

As well as, dental inflammation and more recently, a very nasty digital ulcer on my right index finger (chief typing finger).

Sadly, as I could no longer cope with the pain, I had to take a week’s course of flucloxacillin, which has triggered my GERD symptoms.    

However, when I went to see the wonderful, global scleroderma trailblazer, Prof Chris Denton, for my routine appointment recently, he was and remains, delighted with my return to well being progress.

My consultation appointment is the only time, when I am content to be described as ‘stable’ or ‘normal’, and, voiced by a person whose opinion I respect and value …haha. 

I feel truly blessed to be under the care of such a scleroderma pioneer medical expert.  



 
 

I will be celebrating my 20th year of being a patient at the world expert Scleroderma Unit, The Royal Free Hospital, next month, at the annual Family Day, Saturday 19th May 2018.

This is held within the atrium at the hospital and is free for anyone with an interest in scleroderma and / or Raynaud’s, to attend.

I have written extensively over the course of the last 2 years with my Column here at Scleroderma News, as to how crucial an expert specialist centre and multi disciplinary medical ‘dream team’ are, for best practice and management of this autoimmune, rare disease. 

When I was given those three life changing words ‘You have scleroderma’, back in the autumn of 1997, aged 24, I was also told that I was looking at, ‘a 15month prognosis, at best’.

At that time, both of my parents were very supportive in attending the never ending medical appointments, which followed.

In December 1998, I dragged my tin man body to the Scleroderma Unit at The Royal Free Hospital. Extensive tests followed to ascertain the severity of the disease progression.

During the course of these tests, my parents would kindly accompany me, and at that time, I would have never have believed, that 20 years later, I would still be attending the Unit, having now, survived them both, and, my 'skin cured from scleroderma'.

My recent clinic appointment was the first time that I have been to the Unit, in my ‘orphan’ capacity. Thankfully, thoughts of my reality were suppressed by the very welcome company of Lauren and Christine from the National Institute for Health Research, for the duration.  



This was in ideal opportunity for me to discuss my new role as Patient Research Ambassador for the Royal Free Hospital dermatology and MSK departments. As well as, Lauren and Christine, are better looking accompanies than my parents haha!

I also had the pleasure to meet with fellow patient Jeanie, ‘Miss Universe’ who I have ‘known’, via Facebook, for a while!

Here is a photo of us all.. Living the dream.. 




I am very much looking forward to developing my new role, especially given that an investment in medical research is crucial to improving the scleroderma, Raynaud’s, autoimmune Rare Disease patient experience.  


 


In the meantime, awareness as to our daily plight and health challenges, provides a perfect spotlight for the multitude of our clinical unmet needs.

Huge thanks go to ALL of the global patients, video, who kindly took part in my Autoimmune Disease Awareness Month, #ADAM patient profiles campaign.  


The campaign showed that for optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).
     
Follow: 

Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter, Instagram, Blogger, YouTube: @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. Thank You. 
#HOPE  



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


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.  


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.       


Medical Research and Awareness Raising
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  









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