Friday, 13 October 2017

Primary Raynaud's – Dr Libby Wilson. Raynaud’s Awareness Month, October 2018. Scleroderma, Autoimmune Rare Disease.


 Dr Libby Wilson and Primary Raynaud's.
Raynaud’s Awareness Month, October 2018. 
Scleroderma, Autoimmune Rare Disease. 

WehOOOoo, TODAY, is Libby's birthday.  

Here is our 2018 photo update: 
 

Libby is without doubt, an ExtraOrdinary human being. 

Not only within her professional career, but, Libby is also, an exceptional friend. Whose continued support and kindness, during the last 34 years, I am eternally grateful for. 

Wishing you a fairy Happy Birthday, Libby, Living the dream! 

2017:





Primary Raynaud's – Dr Libby Wilson.

Raynaud’s Awareness Month, October 2017.

Scleroderma, Autoimmune Rare Disease.


Libby is a Consultant in Emergency Medicine at Aintree University NHS Hospital, Liverpool. 
    
Her Raynaud’s symptoms present in her hands and feet only. 

Libby’s hands and feet will turn white in colour, and, are extremely painful upon rewarming, upon the blood returning.   

 

Libby’s Raynaud’s symptoms will be brought about should the temperature be 10 degrees Celsius, or below. 

Whereby, she will wear gloves and thick socks to help prevent a Raynaud’s attack.  



Libby says: 

‘Even the chiller cabinets in the supermarket can be sufficient to turn my hands white and prompt a Raynaud’s episode.’ 

Libby is not taking any medication for her symptoms and has no other underlying diagnosis.  

I am particularly honoured to include Libby in my 2017 campaign for Raynaud’s Awareness Month, as, not only have I been blessed with her friendship for 33 years, ‘my oldest friend’, but, TODAY is her 45th birthday.  

  
This photo was taken on my 44th birthday in June, a day which I am extremely grateful to Libby for, for making so special.  
    
Although, clearly, I am sorry that Libby also experiences Raynaud’s, and the excruciating pain which accompanies an eventual return to normal blood flow. 

Not only am I extremely proud and in awe, as to all Libby has achieved with her career and personal dedication to such, so far, but also, proud and honoured to be Godmother to the youngest of her very beautiful daughters. Although, sadly my diagnosis has made me a less active Godmother than I would have liked to be.  

Libby recently had the pleasure of showing Prince William around the new NHS emergency department at Aintree Hospital.  
 


And, earlier this year, Libby met Daniel Craig, who having been told about my obsession with him and how he helps me through my Raynaud’s and scleroderma house arrest, kindly posed for this selfie. Thanks to Jane the photographer! 
 


I do not know if Daniel knows it, but he has been a strong supporter of Scleroderma Awareness Month, June, for a few years now… Thanks to USA patient Sharon!  

 
 
And of course, Huge thanks to Libby for sharing her Primary Raynaud’s experience for Raynaud’s Awareness Month – Wishing her a fairy happy birthday and a magical year ahead! 


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
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.   

Dr Howell and I, Sept 2017
#RaynaudsFreeWorld #RaynaudsAwarenessMonth

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

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

 
Click here for Twibbon  

 
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. 

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,
 

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.  

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 

 


Click here for Twibbon  

October 2018.  

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