Raynaud's, Scleroderma- 50 Shades of Blue.
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.
Jan 2017
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.
 |
| 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.
Other unmet clinical needs, which patients have in common include:
GUM RECESSION, TOOTH
EXTRACTS,
Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.
An investment in medical research will most certainly
improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.
I am honored to be a
patient research ambassador with the National Institute for Health Research. video.
Overall, for optimum
patient care, 3 hallmarks preside:
Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community.
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.
Living the dream, scleroderma style.
Follow:
Facebook Page: Raynauds Scleroderma Awareness Global Patients
Twitter:
@SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#IamScience
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.
#HOPE
#SclerodermaFreeWorld
#RaynaudsFreeWorld
Raynaud's- How to Diagnose, Click here
To view my article 'Why Global Collaboration is Important', Click here
An edited version of this article, Click here, was published in my Column with Scleroderma News. Sept 2018.
Raynaud’s
Unit, Royal Free Hospital, UK. Facebook Page
My Raynaud’s reality, Click here
All of your monies will be used for medical research purposes only, lead by the world trail blazer Dr Kevin Howell.
Facebook Page: Raynauds Unit Royal Free Hospital
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
'How to diagnose Raynaud's', 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 by 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 ....
To read my articles:
Raynaud's- How to Diagnose, Click here
This year, 2018, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, 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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.
 |
| Dr Howell and I, Sept 2017 |
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
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. Read more, here
Global Patient
Profiles Campaign 2018 Video, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click here
Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click here
Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient
Profiles Campaign Introduction, Click here
'Being your own
awareness advocate', Click here
Scleroderma Awareness
Month Flashback 2017, Click here
Scleroderma Awareness
Month Flashback 2016, Click here
My 2016 Scleroderma Awareness Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
March 2018 Autoimmune
Disease Awareness Month, Click here
World Scleroderma Day
2017, 29th June, Click here
World Scleroderma Day
2016, 29th June. Origins of the date, Click 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
To view my article 'Why Global Collaboration is Important', Click here
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