Wednesday, 2 October 2019

Living the Dream - 50 Shades of Blue. Raynaud's Awareness. The Raynaud's Unit, the Royal Free NHS Hospital, London.

 Living the Dream - 50 Shades of Blue
Raynaud's Awareness. 

The Raynaud's Unit, the Royal Free NHS Hospital, London. 

www.justgiving.com/fundraising/raynaudsunit-royalfree


#RaynaudsFreeWorld  #Research

raynaudsrf.blogspot.com



  


Here in the UK, Autumn has arrived. The colour changes displayed by the natural landscape at this time year, are stunningly beautiful. 

This annual display of nature showing off it’s true colours, provides a reminder that winter is on its way. And, winter, being mine, and every patient with a similar diagnosis, our Nemesis season.  
 




However, sadly, my daily reality is that the severity of my Raynaud’s involvement, keeps me under house arrest all year round.  

I must wear thick fleecy socks and Ugg boots, as well as, gloves, in an attempt to prevent a Raynaud’s attack, as there is no cure.  
 


Hottest day of 2013

My sensitivity is such, that the smallest decrease in temperature, regardless of how warm, will trigger a Raynaud’s attack in my hands and toes. My ears and nose may also become involved. 

My hands and feet are very rarely the same pink-y colour as a ‘normal’ person. My ‘normal’ is a paler pink. 
 
For me - colour changes occur in every Raynaud’s attack. 

At the onset of a Raynaud’s attack, my pale pink will turn to white, visibly showing that there is total blood loss to that particular body part. 

Depending on the severity of the Raynaud’s attack, the white discolouration may be preceded by a blue tinge to the body area. During the white colour stage, it is impossible for me to feel anything with the body area which is affected. 

For Example: my hands / feet (whichever area is affected on a particular attack), will feel numb and extremely cold. My toes and fingers will become extremely rigid. This is painful and extremely debilitating.  
 






Upon the body area becoming warmer with an increase in temperature, the colour changes begin. This shows a gradual return of blood to the affected area. 

My rigid white will gradually transform into a very dark blue colour, which will then slowly change into lighter shades of blue, as the body part becomes warmer. 

Whilst the blood returns to the vessels, the pain is excruciating. There are no words which can even try to describe this horrific sensation. 

Maybe ‘slam your hand in a car door’, or, imagine having that body part being torched with hot pokers. Total exhaustion follows. 
 
A few years ago, I was horrified to see my hands turn black due to me being out in the cold for too long. This still happened whilst wearing my compulsory ‘polar Bond Girl uniform’. 

Prevention of an attack is crucial, since there is no cure.   

    
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  

The digital ulcer which appeared in March on my right index finger, still remains in situ. This appeared further to excessive keyboard use during March, Autoimmune Disease Awareness Month. 

Hence my absence from social media for the last month.  


March 2018


September 2018

A thick, self made, padded bandage with minimal adhesive helps to protect the very tender, thin, red raw skin.  



However, I know that when it comes to digital ulcers, I am very lucky, even though their pain and daily management is extremely soul testing. 

Combined with calcinosis and digital ulcers, this makes for a very painful and debilitating reality. 



Other unmet clinical needs, which patients have in common include:  



 
SCLERODACTYL HANDS,     


 
I am honored to be a patient research ambassador with the National Institute for Health Research. video.    




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.  

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. 





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. 


   



   
#SclerodermaFreeWorld  #RaynaudsFreeWorld 

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


 





To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here     

The Raynaud's Unit, the Royal Free NHS Hospital, London, Click here.  

To view the EULAR treatment guidelines, Click here     

To view a thermal imaging video and equipment, Click here    

To view a thermograph image, Click here     

To view more about the thermograph image, Click here
   
My Raynaud’s reality, Click here     




To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

To read My ‘Invisible Disability’ experience, Click here       



'How to diagnose Raynaud's', Click here      

Raynaud's Awareness 2018, Click here 
Click here for Twibbon   

   
  


 







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 by the world trail blazer Dr Kevin Howell.
  

Dr Howell and I, Sept 2017
  



 


Raynaud's Awareness 2019 Video: 

 



  

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 




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.       



Living the Dream - 50 Shades of Blue
Raynaud's Awareness. 

The Raynaud's Unit, the Royal Free NHS Hospital, London. 

www.justgiving.com/fundraising/raynaudsunit-royalfree


#RaynaudsFreeWorld  #Research

raynaudsrf.blogspot.com









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