The Raynaud's Unit, the Royal Free NHS
Hospital, London.
Raynaud’s Awareness.
##RaynaudsFreeWorld #Research
Raynaud's is caused by involuntary vasospasm.
Triggers can include temperature change and / or stress. It is extremely
painful and debilitating. There is currently no cure with a desperate need for
improved treatments and understanding.
As well as, raise awareness about this debilitating condition, in the hope to generate funds for medical research into achieving a Raynaud's Free World.
Fundraising for medical
research only, to provide a cure for Raynaud's. DONATE
#RaynaudsFreeWorld
About
Dr Kevin Howell:
Contact details: Tel. 020 7472 6550 (answerphone available).
"I am a Clinical Scientist (BSc Physics Birmingham 1991, MSc
Medical Physics with Electronics London 1995, PhD University of Glamorgan 2010)
providing the microvascular physiological measurement service to the
Rheumatology department at the Royal Free Hospital.
I am a Corporate Member of the Institute of Physics and Engineering in
Medicine (IPEM), and sit on their Physiological Measurement Special Interest
Group (PMSIG). I am also Medical Section representative for the United Kingdom
Thermography Association (UKTA). I am a Chartered Scientist (CSci) and an
Associate Member of the Royal Institution.
I am on the editorial board of the journal Thermology
International, and represent UK medical thermographers within the
European Association of Thermology.
Primarily we use two techniques in the microvascular lab: capillaroscopy
and thermography.
Capillaroscopy is the study of the nailfold capillary bed using a
microscope. The images are video recorded so that the capillaries may be
studied and graded for damage at a later stage.
The capillaries are easier to see under the microscope if a thin layer
of oil or clear nail polish is painted over the nailfold beforehand.
Signs of capillary damage include:
Enlargement of capillaries, most obviously in the row nearest the nail.
Loss of capillaries from the nailbed.
Loops which are more tortuous (bushy) than normal.
Extravasation, i.e. the appearance of blood outside of the capillary
loops.
Abnormal capillary findings are very common in scleroderma,
and also seen in some other connective tissue diseases. Hence capillaroscopy
can be a useful diagnostic tool when used in conjunction with other laboratory
tests.
Thermography is the measurement and imaging of skin temperature across the human
body surface. In recent years this has become easier due to the development of
inexpensive but sophisticated thermal cameras.
At the Royal Free most of our thermography measurements are made:
To assess how quickly the circulation returns to the fingers after a
simple cooling test to the hands. This is particularly useful to detect Raynaud’s
phenomenon.
To detect areas of skin which may be inflamed (and therefore warm) in
patients with localised scleroderma (morphoea).
Our thermal imager is the FLIR A320G microbolometer focal plane array.
Links:
Information about
Raynaud’s phenomenon and scleroderma
http://www.ph.bham.ac.uk/ My undergraduate Physics
Department
http://www.smd.qmul.ac.uk/ Home to my MSc course
http://www.medimaging.org / My PhD research department
http://www.royalfree.nhs.uk/ Homepage of the Royal Free
Hospital
http://www.ipem.org.uk/ The Institute of Physics and
Engineering in Medicine
http://www.rigb.org/ The Royal Institution of Great
Britain
http://www.hpc-uk.org/ The Health Professions Council
– registration for Clinical Scientists
http://www.europeanthermology.com/ The European Association of
Thermology
http://www.uhlen.at/thermology-international/ Thermology International,
journal of medical thermography
http://www.ukta.org/ The UK Thermography Association
http://www.flir.com Homepage of FLIR Systems
http://www.charteredscientist.org/
Professor
Chris Denton studied medicine at Guy’s Hospital in London and obtained a PhD
from University College London and trained in connective tissue diseases in
London. Following a Wellcome Trust Advanced Fellowship in molecular genetics at
the M.D. Anderson Cancer Center in Houston, USA he was an Arthritis Research UK
Senior Clinical Research Fellow 2000-2010.
He has
published extensively on laboratory and clinical aspects of connective tissue
disease and pulmonary hypertension.
He leads a large clinical programme in scleroderma at the Royal Free Hospital and co-ordinates multidisciplinary care for more than 1400 patients. He was previously chair of BSR's Heberden Committee and currently chairs the UK Scleroderma Study Group (UKSSG).
https://academic.oup.com/rheumatology/article/55/10/1906/2196591/BSR-and-BHPR-guideline-for-the-treatment-of
http://www.scleroderma-royalfree.org.uk/Mission_Statement.php
Scleroderma,
also called systemic sclerosis, is a severe and potentially life-threatening
rheumatic disease that is rare, affecting 1 in 10000 people. There is no cure
for scleroderma.
The Royal Free Hospital has the largest centre specialising in scleroderma in the UK and it is led by Professor Chris Denton.
Donations to support the clinical and research activity of the Scleroderma Unit are invaluable.
The Royal Free Hospital has the largest centre specialising in scleroderma in the UK and it is led by Professor Chris Denton.
Donations to support the clinical and research activity of the Scleroderma Unit are invaluable.
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#Research
If you would
like to add the Raynaud's twibbon to your Facebook / social media, Profile
Picture - please Click here
To view
Nailfold Capillaroscopy equipment (used to identify possible blood vessel
damage), Click here
My Raynaud’s reality, Click here
To read My ‘Invisible
Disability’ experience, Click here
 |
| Hottest day of 2013 - Im wearing Ugg boots and gloves to try and prevent a Raynaud's attack! |
'How to diagnose Raynaud's', Click here
50 Shades of Blue, Click here
Raynaud's Awareness 2018, Click here
All of your
monies will be used for medical research purposes only, lead by the world trail
blazer Dr Kevin Howell.
 |
| Dr Howell and I, Sept 2017 |
Facebook Page: Raynauds
Unit Royal Free Hospital
Twitter, You Tube, Instagram: @RaynaudsRf
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 del Galdo
‘Learning
from our patients’
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:
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020:
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt 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
2018 Scleroderma Awareness Raising and Medical Research, Click here
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.
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
#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.
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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:
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
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:
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
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 |
 |
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
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.
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
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
"TEAM WORK MAKES THE DREAM WORK"
HUGE thanks to Dr Howell, Prof Denton and the entire team at the Unit
and the Royal Free Charity for all that they do:
#RaynaudsFreeWorld
#SclerodermaFreeWorld.
blog.raynaudsscleroderma.co.uk
The Raynaud's Unit, the Royal Free NHS
Hospital, London.
Raynaud’s Awareness.
##RaynaudsFreeWorld #Research
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