Living the dream as the real-life
'Tin Man'
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
'I am
The Real Life Tin Man'
For today’s article and to tie
in with Autoimmune Disease Awareness Month of March, I am going to focus on the
overlap symptom of Musculoskeletal involvement.
This symptom of stiff, inflamed, painful joints and muscles can be seen across a range of the autoimmune diseases, with arthritis being the most prevalent and commonly known, and diffuse scleroderma mimicking it.
Along with, FATIGUE, adding to the mix.
This symptom of stiff, inflamed, painful joints and muscles can be seen across a range of the autoimmune diseases, with arthritis being the most prevalent and commonly known, and diffuse scleroderma mimicking it.
Along with, FATIGUE, adding to the mix.
My diffuse scleroderma
diagnosis has quite literally turned my body into me being the ‘real life tin
man’.
I experience continual muscle
and joint stiffness which increases in severity if I expect too much of my body
or push my body to do too many tasks in one day.
Similar to the joint swelling seen in rheumatoid arthritis, all of my joints are painful, stiff and swollen, with analgesic / steroid medication providing marginal, borderline relief.
Similar to the joint swelling seen in rheumatoid arthritis, all of my joints are painful, stiff and swollen, with analgesic / steroid medication providing marginal, borderline relief.
I will start my day by bathing
with liquid paraffin to ease my skin symptoms, which, after 19 years since
diagnosis, my 'skin is cured from scleroderma'.
Bathing provides a circulatory
boost which settles my Raynaud's symptoms and also provides
some easing of the continual musculoskeletal pain.
Sadly, I am no longer able to jump in and out of the bath, similar to Daisy from the 1970s TV programme ‘Dukes of Hazard’ jumping in and out of her car.
Sadly, I am no longer able to jump in and out of the bath, similar to Daisy from the 1970s TV programme ‘Dukes of Hazard’ jumping in and out of her car.
Since my diffuse scleroderma
diagnosis in 1997, I can not remember a day whereby I have been pain free.
Living in constant chronic pain is a mission within itself, without the added extra scleroderma symptom specialities (GI, ulcers, calcinosis etc) sprinkled into the mix.
I focussed on several of the current unmet clinical needs, here.
Living in constant chronic pain is a mission within itself, without the added extra scleroderma symptom specialities (GI, ulcers, calcinosis etc) sprinkled into the mix.
I focussed on several of the current unmet clinical needs, here.
I have to be super organised
with planning my time in relation to managing this highly demanding ‘tin man’
like symptom.
Medical appointments clearly take priority in my diary, and should a trip to see one of the world’s leading scleroderma experts, Prof Chris Denton, at the Royal Free Hospital in London be due, weeks of advance preparation will have been started.
Medical appointments clearly take priority in my diary, and should a trip to see one of the world’s leading scleroderma experts, Prof Chris Denton, at the Royal Free Hospital in London be due, weeks of advance preparation will have been started.
As well as, I know that for
the 10 days following a ‘BIG’ day out, I will be unable to function even less
than usual, with an elevated level of pain and tiredness which words can not
justify.
I detailed more of my time management style, here.
I detailed more of my time management style, here.
Since coming out of the
scleroderma closet to the world in 2013, to raise awareness of this rare,
extremely challenging disease, I have made several headlines including:
To read the full article, Click here
To read the full article, Click here
To read the full article, Click here
To read the full article, Click here
Although headline grabbing,
this symptom of Scleroderma is most debilitating and still remains clinically
inadequately managed in terms of quality of life for patient management.
It certainly does feel as though my body has been ‘wrapped in barbed wire and then dipped in concrete’ as by the Daily Mail headline of last year, for June Scleroderma Awareness Month.
It certainly does feel as though my body has been ‘wrapped in barbed wire and then dipped in concrete’ as by the Daily Mail headline of last year, for June Scleroderma Awareness Month.
Having been a regular gym
frequenter, up to, and during the first few years of my diffuse scleroderma
diagnosis, sadly, this activity is now a long distant memory of the last 18
years.
The most basic of tasks such as getting dressed, on some days, can feel similar to a Mount Everest expedition, with the energy of a cardboard cut-out having been left out in the rain overnight.
The most basic of tasks such as getting dressed, on some days, can feel similar to a Mount Everest expedition, with the energy of a cardboard cut-out having been left out in the rain overnight.
It is now nearly 12 months
since I purchased an electric scooter which I use for dog walking. I wrote
about this, here.
Over the years I have attended
several physiotherapy sessions with little gain and lots of pain, and sheer
exhaustion from trying.
However, it still remains a personal goal of mine, to return to the gym, one day. In the meantime, I am working on my sofa surfing skills, allowing my tin man body to rest and heal- reminding myself that, my job for today is to simply ‘get better’.
However, it still remains a personal goal of mine, to return to the gym, one day. In the meantime, I am working on my sofa surfing skills, allowing my tin man body to rest and heal- reminding myself that, my job for today is to simply ‘get better’.
I discussed more of the
autoimmune rare disease similarities, here.
Our next big awareness date as
a global community is June for Scleroderma Awareness Month, and of course, June
29th is World Scleroderma Day
Living the dream, Scleroderma
style.
An edited version of this article was published here, in my Column with Scleroderma News
March 2016.
Planning for the Future, Click here
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
An edited version of this article was published here, in my Column with Scleroderma News
March 2016.
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.
Living the dream as the real-life
'Tin Man'
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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