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, Autoimmune Rare Disease. 


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.  


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  

October 2017.  


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

To read my articles: 

Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, 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   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

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, Click here  
   



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click 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. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO


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. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

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.
I am truly humbled and inspired by their work ethic. 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.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

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. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018