‘You should get out more’
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
These words of ‘advice’ were recently given to me by a non scleroderma patient friend. I am sure that this friend was meaning well, in their approach.
However, on the cusp of my 20 year anniversary since my initial diagnosis, I know that I am the best judge to determine what I should be doing, to minimise my daily symptom severity, and assist my body with its return to well being.
I am
eternally grateful to my medical care dream team, and the world expert Prof Chris Denton who is my clinical lead doctor.
Even though, my current reality for my optimum symptom management, is my full time job.
Even though, my current reality for my optimum symptom management, is my full time job.
Living
with a rare disease which is multi complex in its approach, makes for a busy
diary filled with medical appointments.
I am a lucky scleroderma patient by way of having only minimal internal organ damage, keeping my medical appointments to the most minimum that I can.
Since the effort which goes into moving my 'tin man' body, has to prepared and planned for, days in advance – the Scleroderma Olympian.
I am a lucky scleroderma patient by way of having only minimal internal organ damage, keeping my medical appointments to the most minimum that I can.
Since the effort which goes into moving my 'tin man' body, has to prepared and planned for, days in advance – the Scleroderma Olympian.
Having
had an adventure out, whether it to be to attend a medical appointment or
grocery shopping, my body will be in protest for a few days after. Accompanied
by an overwhelmingly level of fatigue,
which must be respected to minimise my pain severity and mobility.
'Ah great another day to spend in bed' is certainly not one of my favourite mantras. However, I know that this will be inevitable, following any major physical
exertion of ‘getting out more’, including ‘Living the dream being your own Raynaud’s scleroderma, rare disease advocate’.
 |
| World Scleroderma Day 2015, The European Parliament, Brussels |
I
have a strict daily regime to assist with my return to well being, including my
skin care routine and my diet.
Upon waking it takes me 3 hours to be physically ready to be able to leave my front door.
Upon waking it takes me 3 hours to be physically ready to be able to leave my front door.
Following
a 'big day out' to London, it takes me 10 days of intense rest to return my body
to my daily routine regime. All of this makes for a time manager
connoisseur.
However,
sadly, as all scleroderma patients, I am sure, will be able to relate, there is
no precise science to predicting which symptoms will flare or appear on a day
to day level.
This fluctuation being exacerbated by the weather temperature / time of year.
This fluctuation being exacerbated by the weather temperature / time of year.
Here
in the UK we are approaching the end of summer. I am trying to not wail at the
thought of my house arrest daily reality, as a result of the forthcoming
seasons.
My Raynaud’s symptoms are so severe that the 'Magic of Summer' brings only marginal improvements.
These include feeling warmer, and not having to wear as many layers of clothes.
Sadly, my inner ‘Bond Girl’ is still suppressed by the ‘all year round’ Ugg boots and gloves, essential accessories.
My Raynaud’s symptoms are so severe that the 'Magic of Summer' brings only marginal improvements.
These include feeling warmer, and not having to wear as many layers of clothes.
Sadly, my inner ‘Bond Girl’ is still suppressed by the ‘all year round’ Ugg boots and gloves, essential accessories.
 |
| Hottest Day of 2013 - I have to wear Ugg boots and gloves |
For
me, the seasonal change, brings along a different set of symptoms,
including my skin does not feel as soft.
Although, I continue to remain in a state of elation that 'my skin is cured from scleroderma'.
My skin is very sensitive to clothing materials, making my chosen preferred outfit to be my pyjamas or sweat pants. This is not because I am lazy, this is because, these items of clothing are the most comfortable against my skin.
Although, I continue to remain in a state of elation that 'my skin is cured from scleroderma'.
My skin is very sensitive to clothing materials, making my chosen preferred outfit to be my pyjamas or sweat pants. This is not because I am lazy, this is because, these items of clothing are the most comfortable against my skin.
The
actual process of getting dressed becomes a whole new feat with a scleroderma
body, made worse with depleted energy levels. All of this must be accounted for
in preparation for ‘getting out more’.
This
month I have several ‘dates’ which I am fine tuning my body for.
These include the UK Aortic Dissection Awareness Day on the 19th September.
As well as, my well being monitoring appointment with Prof Denton at the expert centre, Scleroderma Unit, The Royal Free Hospital.
So that is a BIG day out, with the following 2 weeks blocked out in my diary, in preparation for my body’s protest at the BIG day out.
These include the UK Aortic Dissection Awareness Day on the 19th September.
As well as, my well being monitoring appointment with Prof Denton at the expert centre, Scleroderma Unit, The Royal Free Hospital.
So that is a BIG day out, with the following 2 weeks blocked out in my diary, in preparation for my body’s protest at the BIG day out.
 |
| December 2016 |
October is Raynaud’s awareness month.
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page, here
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page, here
And,
as for being told to get out more – I remain independent of the good opinion of
others, CosmicFairy444.
Living
the dream, scleroderma style.
Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only.
Thank You.
#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief
An edited version of this article was published here, in my Column with Scleroderma News.
September 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
Raynaud's:
October:
Raynaud's, Click here
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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.
‘You should get out more’
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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