
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.
'Ah great another day to spend in bed' is not my favourite
mantra.
![]() |
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.
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.

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.
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.
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.

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
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
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 Thermograph Video, 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
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
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

The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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:
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 Day Patient Voice


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
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


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
Google Plus: Raynauds Scleroderma Awareness Global Patients
#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
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