Scleroderma
Awareness Month 2018 – Unmet Clinical Needs.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
We are nearly a week
into our annual awareness month, 'spotlight opportunity' for raising awareness
about our rare disease and our day to day reality.
Further to this
year, and last year's Rare Disease Day theme being 'Research', combined with my
personal experience and view about the importance of research, my Scleroderma
Awareness Month 2018 campaign, is also based on research.
Due to the
overwhelming success and interest shown towards my global Patient Profiles
Campaign started for Scleroderma Awareness Month 2017, I have updated each
patient's profile with their personal experience of medical research, and what
they think about medical research.
I owe huge gratitude
and hold immense admiration, to ALL of the patients who kindly took part in the
campaign and who, have kindly provided an update as to their general health and
symptoms, also.
As patients, we know
all too well, how this diagnosis is more often than not, a full time job with
symptom management.
I have a strict diet
and daily routine, in an attempt to minimise the severity of my symptoms, but
even then, the Pandora’s Box connected to my scleroderma or my Raynaud’s
symptoms will present with further unwelcome surprises.
Whilst updating each
patient’s annual review, it was, sadly, no surprise for me to see that no
patient has reported a marked improvement with their symptoms.
All patients
continue to report their same set of symptoms, if not an increase in severity, along
with several other additional symptoms, over the course of the last 12 months.
However, I was
surprised, and sadly, not in a good way, the number of patients who have not
taken part in any clinical trials, but, are willing to do so.
Here, I am earlier
this year, in my Patient Research Ambassador role with the National Institute
for Health Research, talking about why I think medical research is so important.
Although scleroderma
patients are few in number globally, hence the title ‘rare disease’, and no two
patients display the exact same set of symptoms, there are similarities which
can been seen.
The following
clinical unmet needs were prevalent, for the majority of the patients, who
kindly took part in the global patients profile campaign:
CALCINOSIS, Click here
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
SCLERODACTYLY HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, Click here
GASTROINTESTINAL,
Click here
By no means is this
an exhaustive list of the current clinical unmet needs experienced with a
scleroderma and Raynaud’s diagnosis.
This plethora of
symptoms illuminates the systemic effect which the disease process has on the body.
Thus, a multidisciplinary medical expert team is essential, for best patient
care and management.
My Scleroderma Awareness
Month 2016 campaign focussed on the systemic effect and treatment options available. An AtoZ 'all you need to know'.
Another sad reality,
in my view, which most of the profile patients have reported, is the cocktail
of drugs which they take on a daily basis, in an attempt to just suppress their
symptoms.
It is however, very
encouraging and exciting, to see some improvements in the disease management,
care, and understanding process.
For, Swiss patient Alice,
has just celebrated her 6 year double lung transplant, and UK patient Sarah, reports
an improvement with her symptoms, further to her stem cell transplant. Although,
not with the contracture of her fingers, sadly.
Thanks to Sarah for sharing her
image for the ‘Sclerodactyl’ image. And of course, the miraculous Roy and Jacob from the USA!
In fact, ALL of the patients, show immense inner strength and bravery, and are ALL scleroderma miracles, in my view!
Only a few weeks
remain until World Scleroderma Day, 29th June.
Each participant of
the global profiles campaign has also included within their 2018 update, what
they do ‘In Between Medical Appointments’.
As well as, several patients have
kindly shared their creative ‘show stopper’s on social media, which will be
collated into a video for World Scleroderma Day.
If you would like to be involved – please get in contact!
World Scleroderma Day 2017, Flashback
World Scleroderma Day 2016, Origins of the date
World Scleroderma Day 2015, 29th June.
Presentation at the European Parliament.
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.
To view the presentation, Click here
This experience still
remains one of my few patient highlights of the last 21 years. Even though, the
travelling was a harsh reminder as to why I had not been abroad for the previous
decade!
In my view, medical research
provides immense HOPE for a much needed improvement with our day to day reality.
As well as, an improvement in the prognosis for newly diagnosed patients. AND,
ultimately the dream – a Scleroderma Free World.
Follow:
Facebook Page:
Raynauds Scleroderma Awareness Global Patients
Twitter, Blogger, Instagram, 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. No wages / admin costs. Thank You.
An edited version of this article was published here, in my Column with Scleroderma News. June 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.
My Raynaud’s reality, Click here
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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. NO wages or admin costs. Thank You.
2017 Rare
Disease Day unmet clinical needs to the scleroderma patient
2016 Rare Disease UK Parliamentary Reception
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:
Importance of an early diagnosis, Click here
Taking Part in Clinical Research Trials, Click here
Expert Specialist Centres, Click here
My Skin is Cured from Scleroderma, Click here
UK Guidelines for Managing and Treating
Scleroderma, Click here
Fatigue, Click here
Mobility, Click here
'All you need to know', 2016 Awareness Video, Click here
Global Patient Profiles 2018 Video, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, 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
2018, Click here
Raynaud's:
October:
Raynaud's, Click here
To view the UK treatment guidelines for
Raynaud’s Phenomenon, 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
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
Scleroderma
Awareness Month 2018 – Unmet Clinical Needs.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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