Friday, 19 October 2018

Raynaud's Awareness Month, October 2018. Scleroderma, Raynaud's, Autoimmune Rare Disease.

Raynaud's Awareness Month, October 2018.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld #SclerodermaFreeWorld

October is Raynaud's Awareness Month.  

October is also the month when the beautiful autumnal shades over here in the UK, serve as a reminder that, my daily reality of ‘full time hibernation’, is looming. 




My 50 shades of blue 'party trick', whereby my hands and feet change colour at the slightest temperature decrease, is extremely difficult to control during this time of year.  

I have detailed my Raynaud’s reality, highlighting the immense impact that this diagnosis has on my life, combining with the full time job of respecting my scleroderma symptoms. 
Jan 2017 video:

 
  
My tin man body, along with fatigue and mobility challenges, remain constant sources of frustration and make for a full time job with managing my symptoms.  


'Ah great another day to spend in bed' is not my favourite mantra. 

However to look at me, people kindly tell me ‘But, you look so well’   

But, my reality is that my Raynaud’s symptoms keep me under 'house arrest' all year round.  

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

Therefore, my symptoms are easier to manage by avoiding any temperature change.

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


Hottest day of 2013
There is currently no cure for Raynaud’s, with prescription medicines having blood pressure altering, unpleasant, side effects. 

I no longer experience as many digital ulcers and the intense, excruciating pain which comes with them, since taking Bosentan 125mg twice a day.  



The world trail blazer Dr Kevin Howell at the Royal Free Hospital has kindly shared this video which shows the science happening during a Raynaud's episode. 

Thermography equipment
The Thermograph Imagery machinery costs in excess of £5,000. 
 

 

Nailfold Capillaroscopy is the diagnostic test used to identify possible blood vessel damage, which can indicate a possible underlying autoimmune condition.  

The Nailfold Capillaroscopy equipment costs around £1,500. 

 
Kevin Howell
PhDASIS FRPS MIPEM CSci
Clinical Scientist and Honorary Research Associate
UCL Institute of Immunity and Transplantation  
Royal Free Campus
Rowland Hill Street
London. NW3 2PF. UK.   

Without a shadow of doubt, the entire global Raynaud’s community are eternally grateful to Dr Howell for his dedication and commitment to the Raynaud’s enigma over the course of his career within the NHS, which he is currently celebrating his 26th year.  

Many congratulations and Thank You Dr Howell, the global Raynaud’s trailblazer. 

Dr Howell and I, Sept 2017
 
Infact, October is a very busy month for our community, providing lots of awareness platform opportunities.  

October 14- 20th is Invisible Disabilities week. 

World Arthritis Day is October 12th. 


Ironically, October 12th is also the anniversary of the passing of the late scleroderma and Raynaud's trailblazer, Anne Mawdsley


To whom, I am eternally grateful for her friendship, as well as, for all that Anne did to help our community gain a voice over the last few decades.   
 
This was highlighted and recognised within the P152 Poster ‘Optimizing Scleroderma Centers of Excellence: Perspectives from Patients and Systemic Sclerosis (SSc) Experts’ presented at the 4th Systemic Sclerosis World Congress held in Lisbon 2016.  


With an acknowledgement 'dedicated to the memory of Anne, founder of the Raynaud’s and Scleroderma Association UK, who raised over 10 million pounds for SSc research, education and advocacy in her lifetime.'   

P152 Poster is included within Volume 1 Number 1 of the Journal of Scleroderma and Related Disorders.  

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   

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


GUM RECESSION, TOOTH EXTRACTS,






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

NIHR 'Hall of Fame' article 

Overall, for optimum patient care, 3 hallmarks preside:




medicaldream team
(expert specialist as the clinical lead). 


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.  

Raynaud's Awareness Twibbon for social media.  

Follow: 


Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld  

Please DONATE to help fund medical research at The Raynaud's Unit, The Royal Free Hospital, London.   



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. 
October 2018. 

#HOPE  


 

   
#SclerodermaFreeWorld  #RaynaudsFreeWorld 

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



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

DONATE, 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  

  


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     

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. 

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 Index, Click 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    

Becoming a Patient Research Ambassador for the NIHR, 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     

Research is the key. Abstracts from 2016 World Congress, Click here
Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   
Preamble - here
 

RARE DISEASE DAY:
The theme to this years Rare Disease Day is 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  
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.
 
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, 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  
 
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Although the following unmet clinical needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life. 

 
GUM RECESSION, TOOTH EXTRACTS
 
  
 
   
 
RAYNAUD'S,   
 
 

An investment in medical research will most certainly improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.  
 
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).

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.  

Follow: 

Twitter: @SclerodermaRF  @RaynaudsRf  
 
 
#SclerodermaFreeWorld           #RaynaudsFreeWorld
#IamScience


 
   
#SclerodermaFreeWorld #RaynaudsFreeWorld 

 
Click here for Twibbon  

October 2018.    

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