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:  



 
SCLERODACTYL HANDS,     


 
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).  
 


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. 


Follow: 


Twitter, Instagram, Blogger, YouTube: @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. 

  



   
#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   




 



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




  

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 

Raynaud's

October:  
Raynaud's, 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     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

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

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, 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.       



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



#RaynaudsFreeWorld #SclerodermaFreeWorld  




   



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