Living the Dream - 50 Shades of Blue
Raynaud's Awareness.
The Raynaud's Unit, the Royal Free NHS Hospital, London.
www.justgiving.com/fundraising/raynaudsunit-royalfree
www.justgiving.com/fundraising/raynaudsunit-royalfree
#RaynaudsFreeWorld #Research
Here in the UK, Autumn has
arrived. The colour changes displayed by the natural landscape at this time
year, are stunningly beautiful.
This annual display of nature showing off it’s true colours, provides a reminder that winter is on its way. And, winter, being mine, and every patient with a similar diagnosis, our Nemesis season.
This annual display of nature showing off it’s true colours, provides a reminder that winter is on its way. And, winter, being mine, and every patient with a similar diagnosis, our Nemesis season.
However, sadly, my daily reality
is that the
severity of my Raynaud’s involvement, keeps me under house arrest all year round.
I must wear thick fleecy socks and Ugg boots, as
well as, gloves, in an attempt to prevent a Raynaud’s attack, as there is no
cure.
 |
| Hottest day of 2013 |
My sensitivity is such, that the smallest decrease
in temperature, regardless of how warm, will trigger a Raynaud’s attack in my
hands and toes. My ears and nose may also become involved.
My hands and feet are very rarely the same pink-y colour as a ‘normal’
person. My ‘normal’ is a paler pink.
For me - colour changes occur in every Raynaud’s attack.
At the onset of a Raynaud’s attack, my pale pink
will turn to white, visibly showing that there is total blood loss to that
particular body part.
Depending on the severity of the Raynaud’s attack,
the white discolouration may be preceded by a blue tinge to the body area. During
the white colour stage, it is impossible for me to feel anything with the body
area which is affected.
For Example: my hands / feet (whichever area is
affected on a particular attack), will feel numb and extremely cold. My toes
and fingers will become extremely rigid. This is painful and extremely
debilitating.
Upon the body area becoming warmer with an increase
in temperature, the colour changes begin. This shows a gradual return of blood
to the affected area.
My rigid white will gradually transform into a very
dark blue colour, which will then slowly change into lighter shades of blue, as
the body part becomes warmer.
Whilst the blood returns to the vessels, the pain
is excruciating. There are no words which can even try to describe this horrific
sensation.
Maybe ‘slam your hand in a car door’, or, imagine having that body
part being torched with hot pokers. Total exhaustion follows.
A few years ago, I was horrified to see my hands turn
black due to me being out in the cold for too long. This still happened whilst wearing
my compulsory ‘polar Bond Girl uniform’.
Prevention of an attack is crucial,
since there is no cure.
During
the course of my global patient profiles campaign
for Scleroderma Awareness Month 2017 and 2018, every patient detailed how Raynaud’s and digital ulcers were a continual problem to them. INDEX
The
digital ulcer which appeared in March on my right index finger, still remains in
situ. This appeared further to excessive keyboard use during March, Autoimmune
Disease Awareness Month.
Hence my absence from social media for the last month.
Hence my absence from social media for the last month.
 |
| March 2018 |
 |
| September 2018 |
A thick, self made, padded bandage with minimal adhesive helps to protect the very tender, thin, red raw skin.
However, I know that when it comes to digital ulcers, I am very lucky, even though their pain and daily management is extremely soul testing.
I am honored to be a
patient research ambassador
with the National Institute for Health Research. video.
For optimum patient care, 3 hallmarks preside:
In the meantime, I
continue to remind myself that 'My Job Today is to Simply Get Better', with hope, and my canine diva dream team, as my constant companions.
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. Thank You.
To view the UK
treatment guidelines for Raynaud’s Phenomenon, Click here
The Raynaud's Unit, the Royal Free NHS Hospital, London, Click here.
To view the EULAR treatment guidelines, Click here
To view a thermal imaging video and equipment, Click here
The Raynaud's Unit, the Royal Free NHS Hospital, London, Click here.
To view the EULAR treatment guidelines, Click here
To view a thermal imaging video and equipment, Click here
To view a thermograph image, Click here
To view more
about the thermograph image, Click here
To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
here
Click here for Twibbon
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 |
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.
#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.
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.
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.
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
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 - 50 Shades of Blue
raynaudsrf.blogspot.com
Raynaud's Awareness.
The Raynaud's Unit, the Royal Free NHS Hospital, London.
www.justgiving.com/fundraising/raynaudsunit-royalfree
www.justgiving.com/fundraising/raynaudsunit-royalfree
#RaynaudsFreeWorld #Research
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