Saturday, 21 October 2017

How to diagnose Raynaud's, The Invisible Disability, Invisible Disabilities Week, 15-21 October, Raynaud’s Awareness Month Scleroderma, Rare Disease

Raynaud's The Invisible Disability - How to Diagnose 

Invisible Disabilities Week, 15-21 October, 
Raynaud’s Awareness Month, Scleroderma, 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 efforts campaign, and still remains insitu further to two lots of flucloxacillin 500mg, four times a day. 

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 here 

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

Clinical Scientist and Honorary Research Associate

UCL Institute of Immunity and Transplantation
Royal Free Campus
Rowland Hill Street
London. NW3 2PF

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    

To read My Raynaud’s reality, Click here   

To read My ‘Invisible Disability’ experience, Click here  

Raynaud’s Unit, Royal Free Hospital, UK. - RURF –
Please DONATE where 100% of your donation will be used for medical research only 

#RaynaudsFreeWorld  #RaynaudsAwarenessMonth #IDW17   

Follow Raynauds Unit Royal Free Facebook Page for regular updates.
Twitter: @RaynaudsRf

Living the dream, hoping for a cure #RaynaudsFreeWorld