Wednesday, 11 October 2017

Living the dream- Raynaud's Style, Nicola Whitehill. Raynaud's Awareness Month, October 2017. Scleroderma, Autoimmune Rare Disease.

Living the dream- Raynaud's Style, Nicola Whitehill.

Raynaud's Awareness Month, October 2017.

Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  




Living the dream- Raynaud's Style, Nicola Whitehill.


Raynaud's Awareness Month, October 2017.

Scleroderma, Autoimmune Rare Disease.


Sunday, 1st October, saw the start of #RaynaudsAwarenessMonth 2017. 

As scleroderma patients, we know all too well, how debilitating and painful the symptoms of Raynaud’s can be. 

Along with, the symptom control of the ‘added extras’ which a lack of blood supply can cause to the scleroderma patient - digital ulcers, calcinosis, to name but a few. 
  



Every patient who kindly took part in my global patient profile Campaign 2017, for Scleroderma Awareness Month 2017, reported Raynaud’s to be problematic and difficult to manage for them.  
 

 



Some fast facts about Raynaud’s:

Nearly every scleroderma patient will present with Raynaud’s symptoms, with some patients reporting their Raynaud’s symptoms as their initial symptom to their scleroderma diagnosis. 

Raynaud’s is the narrowing and constriction of the blood vessels to the extremities, hands and feet, as well as, other body parts. 



Raynaud’s can present on its own, where it is known as 'Primary', as can be seen with Jane, and Libby, or it can be ‘Secondary’ to another diagnosis, for example, scleroderma. 

Raynaud’s is ‘secondary’ in other autoimmune patients, for example, Lupus, Sjogrens.  Debbie.   


As well as, patients who have worked in an industrial environment, for example, vibration white finger, and a patient whose body has been subjected to intense hypothermic conditions, for example, military operational personnel.


Back to my Raynaud’s reality  

My Raynaud’s sensitivity is so severe that an attack can be induced by me just moving from one room to another, indoors! 

My symptoms are easier to manage by avoiding any temperature change. 

Should I have to go out, I must wear the appropriate clothing. 

My inner ‘Bond Girl’ absconded years ago, with me being forced to wear Ugg boots and clothes even in the summer. 

Hottest day of 2013, I have to wear Ugg boots and gloves.
sunny autumn day 2016

On the 27th September I had the pleasure of attending my monitoring check up appointment with my hero, world expert, Prof Chris Denton, at the Scleroderma Unit in London. 

The effort of moving my 'tin man' body for this 12 hour BIG day out takes weeks of advance preparation, as well as recovery. 

I still remain in the ‘fragile zone’. 

However, it is always an honour and an extremely humbling experience to attend the Scleroderma Unit, and meet with other patients- 

A huge thank you to Deani

As well as, continue to impress Prof Denton with my symptom reversal after 20 years, from first having heard those life changing words ‘You have scleroderma and Raynaud’s’. 

Initial Diagnosis.  



I was delighted that my trip co-incided with a lovely, warm 20degree Celsius autumn day, in London. 

This enabled me to have my photo taken for a second, with me wearing just my t shirt, without me ‘losing’ my blood circulation to my hands or feet, outside of the main front entrance, to this global expert specialist centre.

I had 2 fleece jumpers, and a waterproof with me, and I was wearing my winter ‘biker Ugg boots’, with thick thinsulate socks. And of course, my gloves.  


27.9.17

30.11.16 - Eskimo outfit


For my best Raynaud’s symptom management, I have found that 'prevention is better than cure'. 

Indeed, there is no cure, with various drugs being used to open the blood vessels and thereby lowering blood pressure. 

The only medication which I take is Bosentan 125mg twice a day, which has reduced my digital ulcer frequency.  

After my consultation, I went to visit Dr Kevin Howell, who celebrates his 25th anniversary of working for the NHS this year. 

Dr Howell is a world expert on Raynaud’s and every patient who visits the Unit will be familiar with his horrendous bucket of ice cold water test, upon their initial visit. 
 



It is 19 years since I originally delved my hands into his bucket and I still cringe at the excruciating pain which this caused, evoking a Raynaud’s attack to my hands. 
 

 


This equipment photographs the thermal (heat) emitted from the body part of interest. 

The image below shows the heat transmitted by a normal, non Raynaud’s individual, following the ice bucket hand challenge, compared to that of a Raynaud’s patient- seen in the central image and right hand image of the frame.  


 


A specific camera, a capillaroscopy machine, is then used to assess any permanent damage to the capillaries and blood vessels. 

Read more, here.   

We desperately need a cure for Raynaud’s. #RaynaudsFreeWorld  

Living the dream, Raynaud’s and scleroderma style. 
 



Raynaud's, Invisible Disablity, 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     


   

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  






Please DONATE to help fund medical research into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free Hospital, UK.

All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.   

#RaynaudsFreeWorld #RaynaudsAwarenessMonth

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




Living the dream, hoping for a cure .... 


  



Click here for Twibbon 



An edited version of this article was published here, in my Column with Scleroderma News. 
October 2017. 
 


  

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 



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.       



Living the dream- Raynaud's Style, Nicola Whitehill.

Raynaud's Awareness Month, October 2017.

Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  














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