Wednesday, 3 October 2018

Raynaud's, Scleroderma: 50 Shades of Blue. Autoimmune, Rare Disease.


Raynaud's, Scleroderma- 50 Shades of Blue. 

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.   

Jan 2017

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: 


GUM RECESSION, TOOTH EXTRACTS,






 

Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.  
 
An investment in medical research will most certainly improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.
 
I am honored to be a patient research ambassador with the National Institute for Health Research. video.

Overall, for optimum patient care, 3 hallmarks preside:




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. 

Living the dream, scleroderma style. 

          
Follow: 


Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#IamScience



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  

 

   
#SclerodermaFreeWorld  #RaynaudsFreeWorld 

An edited version of this article, Click here, was published in my Column with Scleroderma News. Sept 2018. 
 
 
Raynaud’s Unit, Royal Free Hospital, UK. Facebook Page 





If you would like to add the Raynaud's twibbon to your Facebook Profile Picture - please 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   

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  
 
  

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
#RaynaudsFreeWorld #RaynaudsAwarenessMonth

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


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

OCTOBER: 
 

Raynaud's- How to Diagnose, Click here    

This year, 2018, 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. Along with the Raynaud's world trail blazer, Dr Kevin Howell. 

Dr Howell and I, Sept 2017
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 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   

Global Patient Profiles Campaign 2018 Video, Click here   

2018 Scleroderma Awareness Raising and Medical Research, 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 Scleroderma Awareness 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  
 
PLEASE DONATE here   

#SclerodermaFreeWorld #RaynaudsFreeWorld 

Oct 2018.
 

 


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