Saturday, 21 October 2017

How To Diagnose Raynaud's, The Invisible Disability. Invisible Disabilities Week, 15-21 October, Raynaud’s Awareness Month, October 2017. Scleroderma, Autoimmune Rare Disease.

How To Diagnose Raynaud's, The Invisible Disability.

Invisible Disabilities Week, 15-21 October.

Raynaud’s Awareness Month, October 2017. 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  




Invisible Disabilities Week’ started on Sunday 15th October, combining, with the current ongoing ‘October Raynaud’s Awareness Month’ Campaign

Making this week, a very busy week, for our global patient community with awareness raising opportunities. 
  
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.  
  
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  

Hottest day of 2013

My Raynaud’s symptoms keep me under 'house arrest' all year round. 

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.  


However, should I put too much pressure / wear and tear on the soft tissue of my digits, I will start an ulcer or calcinosis. 

I currently have a pesky one which appeared following my Patient Profile campaign for Scleroderma Awareness Month 2017 efforts, and still remains insitu further to two lots of flucloxacillin 500mg, four times a day. 

Click here, for a flashback reminder.

This reality is turning into my 'digital ulcer nightmare', as antibiotics upset my gut flora. 

My diet is critical to maintaining my energy levels and optimum symptom management. 


The reduced blood flow in my hands during a Raynaud’s attack, makes for the perfect conditions for an ulcer or calcinosis to form. 

This is why it is so important for me to prevent any Raynaud’s attack in the first place. 

Ulcers and calcinosis can take months / years to heal, and are extremely debilitating, painful and high maintenance in the meantime. 

Making every task, including bathing, to require gloves to be worn. 

I am fortunate in that I have never experienced gangrene, which follows, should the infection had not had an early enough medical intervention.

Raynaud’s can therefore, be VERY serious if not managed properly. 

The discolouration of the digits, or any of the other body parts affected, (this varies in individuals), is a non invasive, visible indication as to Raynaud’s phenomenon.  


To identify the level of blood vessel involvement and to distinguish between primary Raynaud’s (Libby and Jane), and secondary Raynaud’s, two diagnostic tests are carried out. 

These tests are extremely helpful in determining whether there is the presence of an underlying condition, such as an autoimmune disease. 

Thermograph Imaging 
 
This process requires the body part, hand or foot, to be immersed in water at a set temperature, for a certain length of time. 

The heat generated from the body part is then measured over time using the thermography equipment. This indicates the level of blood flow and any possible impairment.   



To view Thermograph Video, Click here   

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


Nailfold Capillaroscopy  


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

In a normal and primary Raynaud’s patient the blood vessels will appear symmetrical and smooth-like. 


In a patient with scleroderma or other autoimmune disease, the vessels will have become distorted in their structure and appearance, thus impacting on blood flow impairment. 


The Nailfold Capillaroscopy equipment costs around £1,500 
    
To read more about Nailfold Capillaroscopy equipment, Click here 


Huge thanks go to Dr Howell for making these images available.  

Kevin Howell PhD ASIS 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 25th year.  

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


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



 



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.   





#RaynaudsFreeWorld #RaynaudsAwarenessMonth

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





Living the dream, hoping for a cure. 

 

 


Click here for Twibbon  

October 2017.  

 


An edited version of this article was published here, in my Column with Scleroderma News. 
October 2017.  
 


  

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. 

For optimum patient care, 3 hallmarks preside:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

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 





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.       



How To Diagnose Raynaud's, The Invisible Disability.

Invisible Disabilities Week, 15-21 October.

Raynaud’s Awareness Month, October 2017. 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  













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