Travelling
With An Invisible Disability – BSR Presentation 2015
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
May 1st - 3rd, TODAY, The
Bristish Society for Rheumatology (BSR) is holding its annual conference.
This year, Liverpool is the hosting city, which is not too far away from me here, in Southport.
This year, Liverpool is the hosting city, which is not too far away from me here, in Southport.
Sadly, the
practicalities of me actually being able to attend, even though the venue is
not too far away, are endless.
As with everything,
you only get to know your limitations by putting yourself out of your comfort
zone.
Being in my 21st year of living with the autoimmune, Rare Disease scleroderma and Raynaud’s diagnosis, I have learnt the hard way, that
by pushing myself with physical exertion, my body will protest, and with a
vengeance.
April 2015, I was
honoured to be a presenter at the BSR’s annual conference in Manchester.
My presentation included my
symptoms, the chemotherapies and immunosuppressants which have stabalised my
disease activity, as well as, my survival and coping strategies, for living
with this life changing in every way imaginable and unimaginable, diagnosis.
However, for
purposes of the remainder of this article, I intend on highlighting the actual
physical difficulties which arose, just with the logistics of me being able to
live a day, like a ‘normal’ person, during my trip.
Manchester is only
40miles away from Southport, with a direct train line.
I am not easily
transportable at the best times, unless sitting in the front passenger seat of
a ‘constant temperature’ heated car.
This is in an
attempt to minimise my Raynaud’s flaring.
The smallest decrease change in
temperature, regardless of how warm it is, will be sufficient to trigger my
hands to spasm and change colour.
This situation has
to be avoided, especially if ulcers or calcinosis are present.
The presence of
which, has been my ‘normal’ for over two decades now.
However, I was so
delighted at having been invited to present at the BSR conference 2015, I took
myself out of my comfort zone, and booked my train ticket to Manchester,
departing Southport 6.20am.
My alarm clock was
set for 3.30am.
3 hours is my
‘normal’ time for being able to push my tin man body out of my front door, upon
waking.
The days of waking
up, feeling refreshed, jumping out of bed to take a quick shower and fly out of
the door, are long gone, and a very distant memory.
As I was driving
along the coast road to Southport train station, the sun was just visible above
the horizon, with a hazy blue sky.
I parked up in the
station car park and thought what a miracle it was that I had made it out at
this time, and on time!
I then went and
schmoozed the train guard to allow me to stay near his heater, until my train
arrived.
A quick flash of my
blue / black tinged hands, briefly removed from my Ugg gloves, did the trick.
As opposed to my female persuasive charms, which scleroderma depleted years
ago, judging by my latest admirers! Haha!
The hour train ride
was a whole new experience, one which I have not repeated since, and do not
intend on doing again with my 'tin man' body.
My musculoskeletal
inflammation and stiffness makes me feel as though my body is weighed down with
lead.
Along with muscle fatigue beyond measure. This is before I even leave my
home, and is my constant.
I have quite long
legs, with my scleroderma swollen ankles and knees, andso, sitting in any
confined space such as a seat on any public transport medium, is uncomfortable,
almost impossible, for me.
However, for
purposes of an hour, I put myself out of my comfort zone, and sat trying to
ignore the intense discomfort, added by the motion of the train.
As the train
approached Manchester, it became very busy. This required me having to
apologise to my fellow near by passengers that I was unable to bend my legs
more to make more leg room available.
I was very relieved
to arrive in Manchester. Upon alighting the train, there was a huge set of
steps, to get up to exit the station. My heart sank. I could not stop, as the
flow of the crowd was too strong.
I gripped the hand
rail at the side of the steps, as best as I could. I have very little, if any,
grip, due to my very tender, sore, scleroderma damaged fingers.
I then had to
negotiate trying to get my legs up the steps, bending my swollen, stiff knees.
I had just about got into a rhythm, albeit elegance and style were not
included, when a perfectly abled body, man stood in front of me, coming down
the steps.
He was in a rush and
was telling / shouting at me to move out of the way.
I tried to explain
to him that I was unable to let go of the handrail, but he pushed me out of the
way, causing me to stumble into some people!
I eventually made it
up the steps and reflected on my ‘invisible disability’ persona experience.
Had I been equipped
with a sign around my neck, Paddington style, or maybe a teal ribbon tattoo,
would this have prevented my recent public humiliation, by trying to be ‘normal’
again?
I doubt it –
ignorance is ignorance, and as patients living with a degenerative Rare
Disease, education and awareness of such, come along as an optional duty, sadly.
This Scleroderma Olympian is in training for the Scleroderma Unit Family Day on the 19th
May at the Royal Free Hospital.
Living the dream,
scleroderma style.
Follow:
Facebook Page: Raynauds Scleroderma Awareness
Global Patients
Twitter, Instagram, Blogger, YouTube:
@SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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 
An edited version of this article was published here, in my Column with Scleroderma News. April 2018.
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.
Travelling
With An Invisible Disability – BSR Presentation 2015
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
