Medical Research and
Awareness Raising
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Spring has reluctantly arrived over here in the
UK. An increase in the temperature is most welcome, even if it is only marginal,
due to my location!
However, similar to all of my fellow patients
around the world, to make it out of winter without any body crisis by way of
flare ups or the like, is quite frankly, a miracle.
Even with continual house arrest, commencing in
autumn, I have still not managed to escape the wrath of the cold winter months,
unscathed.
Winter really is, my nemesis season.
This winter,
2017 – 2018, I have had numerous health challenges in addition to my
scleroderma and Raynaud’s ‘carte blanche’ symptoms.
Even after living with this diagnosis for 21
years, it still continues to amaze me with the surprises which it can ‘present’,
and not in a good way!
So far this year, my Pandora’s Box of symptoms have
included Shingles, my Bowen’s disease skin flare / follow up.
As well as, dental inflammation and more recently,
a very nasty digital ulcer on my right index finger (chief typing finger).
Sadly, as I could no longer cope with the pain,
I had to take a week’s course of flucloxacillin, which has triggered my GERD
symptoms.
However, when I went to see the wonderful, global
scleroderma trailblazer, Prof Chris Denton, for my routine appointment
recently, he was and remains, delighted with my return to well being progress.
My consultation appointment is the only time, when
I am content to be described as ‘stable’ or ‘normal’, and, voiced by a person
whose opinion I respect and value …haha.
I feel truly blessed to be under the care of
such a scleroderma pioneer medical expert.
I will be celebrating my 20th year
of being a patient at the world expert Scleroderma Unit, The Royal Free Hospital,
next month, at the annual Family Day, Saturday 19th May 2018.
This is held within the atrium at the hospital
and is free for anyone with an interest in scleroderma and / or Raynaud’s, to
attend.
I have written extensively over the course of
the last 2 years with my Column here at Scleroderma News, as to how crucial an
expert specialist centre and multi disciplinary medical ‘dream team’ are, for
best practice and management of this autoimmune, rare disease.
When I was given those three life changing
words ‘You have scleroderma’, back in the autumn of 1997, aged 24, I was also told
that I was looking at, ‘a 15month prognosis, at best’.
At that time, both of my parents were very
supportive in attending the never ending medical appointments, which followed.
In December 1998, I dragged my tin man body to
the Scleroderma Unit at The Royal Free Hospital. Extensive tests followed to
ascertain the severity of the disease progression.
During the course of these tests, my parents would
kindly accompany me, and at that time, I would have never have believed, that 20
years later, I would still be attending the Unit, having now, survived them both, and, my 'skin cured from scleroderma'.
My recent clinic appointment was the first time
that I have been to the Unit, in my ‘orphan’ capacity. Thankfully, thoughts of my
reality were suppressed by the very welcome company of Lauren and Christine
from the National Institute for Health Research, for the duration.
This was in ideal opportunity for me to discuss
my new role as Patient Research Ambassador for the Royal Free Hospital dermatology
and MSK departments. As well as, Lauren and Christine, are better looking
accompanies than my parents haha!
I also had the pleasure to meet with fellow
patient Jeanie, ‘Miss Universe’ who I have ‘known’, via Facebook, for a while!
Here is a photo of us all.. Living the dream..
I am very much looking forward to developing my
new role, especially given that an investment
in medical research is crucial to improving the scleroderma, Raynaud’s,
autoimmune Rare Disease patient experience.
In the meantime, awareness as to our daily
plight and health challenges, provides a perfect spotlight for the multitude of
our clinical unmet needs.
Huge thanks go to ALL of the global patients, video,
who kindly took part in my Autoimmune Disease Awareness Month, #ADAM patient
profiles campaign.
The campaign showed that for optimum
patient care, 3 hallmarks preside:
supported by a medical ‘dream team’
(expert specialist as the clinical lead).
Follow:
Facebook Page: Raynauds Scleroderma Awareness Global
Patients
Twitter, Instagram, Blogger, YouTube: @SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
Living the dream, scleroderma
style.
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.
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. 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.
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.
Medical Research and
Awareness Raising
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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