Wednesday, 3 October 2018

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.
#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: 


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. 




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   
   
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   

Click here for Twibbon   
 


To view more about the thermograph image, Click here
 
 
 
 


To read My ‘Invisible Disability’ experience, Click here     

Hottest day of 2013 - Im wearing Ugg boots and gloves to try and prevent a Raynaud's attack!

Raynaud's Awareness 2018, Click here     
 
The Raynaud's Unit, the Royal Free Hospital, 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
  

Facebook Page: Raynauds Unit Royal Free Hospital
  
Twitter, You Tube, Instagram: @RaynaudsRf
 
To Read My Articles:    

Leaving a gift in my Will, Click here   

Planning for the Future, Click here  
Rare Disease Day 2019:   
 
Leaving a Legacy Gift, Click here     
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
 
Becoming a Patient Research Ambassador for the NIHR, 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
     


Order your awareness t-shirt here  

June 2019
Huge Thanks to Ellen, Dianne and the Royal Free Charity team

Importance of an early diagnosis, Click here   

Unmet clinical needs, 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
   

Sept 2017

Prof Chris Denton and I, Sept 2017
This year, 2019, I am celebrating 21 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 diagnosing doctor, that I was looking at a 15month prognosis.  
Read more about me, here   



Chat Magazine 16.5.19
 

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, at The European Parliament 2015.
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 2016 Scleroderma Awareness Campaign, A to Z Video, all you need to know:  

 
 
To view global patient profiles, my 2017/ 2018 video Scleroderma Awareness Campaign Index     

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   
RARE DISEASE DAY: 
The theme to 2018 year's Rare Disease Day was Research
Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception

2017 Rare Disease Day Flashback  
2017 Rare Disease Day unmet clinical needs to the scleroderma patient 
   
 
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.
I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

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:  
Early Diagnosis 
Expert Specialist Centres 
Access to Innovative Medicines 
Where MEDICAL RESEARCH investment is VITAL.
Research is the key
 
 



 

 

For latest updates follow: 
 
Facebook, Twitter, You Tube, Instagram:
SclerodermaUnit Royal Free: @SclerodermaRF
  
RaynaudsUnit Royal Free @RaynaudsRf 

Facebook Pages:
#SclerodermaFreeWorld #RaynaudsFreeWorld  #Research
    
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.
Thank You. 

No comments:

Post a Comment