Living
the dream- Raynaud's Style, Nicola Whitehill.
Raynaud's
Awareness Month, October 2017.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Living
the dream- Raynaud's Style, Nicola Whitehill.
Raynaud's
Awareness Month, October 2017.
Scleroderma,
Autoimmune Rare Disease.
Sunday, 1st October, saw the start of #RaynaudsAwarenessMonth 2017.
As
scleroderma patients, we know all too well, how debilitating and painful the symptoms
of Raynaud’s can be.
Along with, the symptom control of the ‘added extras’
which a lack of blood supply can cause to the scleroderma patient - digital ulcers, calcinosis, to
name but a few.
Every
patient who kindly took part in my global patient profile Campaign 2017, for
Scleroderma Awareness Month 2017, reported Raynaud’s to be problematic and
difficult to manage for them.
Nearly
every scleroderma patient will present with Raynaud’s symptoms, with some patients
reporting their Raynaud’s symptoms as their initial symptom to their
scleroderma diagnosis.
Raynaud’s
is the narrowing and constriction of the blood vessels to the extremities,
hands and feet, as well as, other body parts.
Raynaud’s
can present on its own, where it is known as 'Primary', as can be seen with Jane, and Libby, or
it can be ‘Secondary’ to another diagnosis, for example, scleroderma.
Raynaud’s
is ‘secondary’ in other autoimmune patients, for example, Lupus, Sjogrens. Debbie.
As well as, patients who have worked in an industrial environment, for example, vibration white finger, and a patient whose body has been subjected to intense hypothermic conditions, for example, military operational personnel.
As well as, patients who have worked in an industrial environment, for example, vibration white finger, and a patient whose body has been subjected to intense hypothermic conditions, for example, military operational personnel.
Back to my Raynaud’s reality
My
Raynaud’s sensitivity is so severe that an attack can be induced by me just
moving from one room to another, indoors!
My symptoms are easier to manage by avoiding any temperature change.
Should I have to go out, I must wear the appropriate clothing.
My inner ‘Bond Girl’ absconded years ago, with me being forced to wear Ugg boots and clothes even in the summer.
My symptoms are easier to manage by avoiding any temperature change.
Should I have to go out, I must wear the appropriate clothing.
My inner ‘Bond Girl’ absconded years ago, with me being forced to wear Ugg boots and clothes even in the summer.
 |
| Hottest day of 2013, I have to wear Ugg boots and gloves. |
 |
| sunny autumn day 2016 |
On the 27th September I had the pleasure of attending my monitoring check up appointment with my hero, world expert, Prof Chris Denton, at the Scleroderma Unit in London.
The
effort of moving my 'tin man' body for this 12 hour BIG day out takes weeks of
advance preparation, as well as recovery.
I still remain in the ‘fragile zone’.
I still remain in the ‘fragile zone’.
However, it is always an honour and an extremely humbling experience to attend
the Scleroderma Unit, and meet with other patients-
A huge thank you to Deani.
As well as, continue to impress Prof Denton with my symptom reversal after 20 years, from first having heard those life changing words ‘You have scleroderma and Raynaud’s’.
Initial Diagnosis.
A huge thank you to Deani.
As well as, continue to impress Prof Denton with my symptom reversal after 20 years, from first having heard those life changing words ‘You have scleroderma and Raynaud’s’.
Initial Diagnosis.
I
was delighted that my trip co-incided with a lovely, warm 20degree Celsius
autumn day, in London.
This enabled me to have my photo taken for a second, with me wearing just my t shirt, without me ‘losing’ my blood circulation to my hands or feet, outside of the main front entrance, to this global expert specialist centre.
This enabled me to have my photo taken for a second, with me wearing just my t shirt, without me ‘losing’ my blood circulation to my hands or feet, outside of the main front entrance, to this global expert specialist centre.
I had 2 fleece jumpers, and a waterproof with me, and I was wearing
my winter ‘biker Ugg boots’, with thick thinsulate socks. And of course, my
gloves.
 |
| 27.9.17 |
 |
| 30.11.16 - Eskimo outfit |
Indeed, there is no cure, with various drugs being used to open the
blood vessels and thereby lowering blood pressure.
The only medication which I take is Bosentan 125mg twice a day, which has reduced my digital ulcer frequency.
The only medication which I take is Bosentan 125mg twice a day, which has reduced my digital ulcer frequency.
After
my consultation, I went to visit Dr Kevin Howell, who celebrates his 25th
anniversary of working for the NHS this year.
Dr Howell is a world expert on Raynaud’s and every patient who visits the Unit will be familiar with his horrendous bucket of ice cold water test, upon their initial visit.
Dr Howell is a world expert on Raynaud’s and every patient who visits the Unit will be familiar with his horrendous bucket of ice cold water test, upon their initial visit.
It
is 19 years since I originally delved my hands into his bucket and I still
cringe at the excruciating pain which this caused, evoking a Raynaud’s attack
to my hands.
This
equipment photographs the thermal (heat) emitted from the body part of
interest.
The
image below shows the heat transmitted by a normal, non Raynaud’s individual,
following the ice bucket hand challenge, compared to that of a Raynaud’s
patient- seen in the central image and right hand image of the frame.
A
specific camera, a capillaroscopy machine, is then used to assess any permanent
damage to the capillaries and blood vessels.
Read more, here.
Read more, here.
We
desperately need a cure for Raynaud’s. #RaynaudsFreeWorld
Living the dream, Raynaud’s
and scleroderma style.
All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.
Facebook Page: Raynauds Unit Royal Free Hospital
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 ....
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:
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 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.
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.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
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 |
 |
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.
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.
To view the presentation, Click here
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@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.
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
Living
the dream- Raynaud's Style, Nicola Whitehill.
Raynaud's
Awareness Month, October 2017.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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