Why Research and Patient Profiles?
Scleroderma Awareness Month 2017.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
Scleroderma Awareness Month 2017.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
1st June, saw the start of Scleroderma Awareness Month, with the 29th, being World Scleroderma Day.
Further to this year’s Rare Disease Day
2017 theme being ‘Research – With Research Possibilities are Limitless’, I have
made ‘Research’ the theme of my Scleroderma Awareness Month 2017 Campaign,
along with patient profiles.
To read my articles for Rare Disease Day 2017:
'Medical Research and its importance', Click here
'Clinical Unmet Needs for the Raynaud's Scleroderma patient', Click here
'Medical Research and its importance', Click here
'Clinical Unmet Needs for the Raynaud's Scleroderma patient', Click here
In this article, I intend on
discussing the importance of research, combined with a global collaborative
approach.
As well as, how raising scleroderma awareness during June, can maximise the potential of the cause and cure of this rare disease being discovered, in our lifetime.
As well as, how raising scleroderma awareness during June, can maximise the potential of the cause and cure of this rare disease being discovered, in our lifetime.
I discussed more about how
research provides immense hope to the scleroderma Raynaud’s rare disease
patient in my last article about the importance of scleroderma awareness month,
Click here
Why
patient profiles?
This autumn, 2017, marks my 20th
anniversary of living with the disease.
Upon my initial diagnosis, in 1997,
aged 24, I was given a prognosis of 15 months.
At that time, I was working as
a medical representative for Bristol Myers Squibb, as well as, studying on a
part time distance learning basis to achieve my dream to become a barrister.
I consider myself to be an
extremely ‘lucky’ scleroderma Raynaud’s patient, in that, I have minimal
internal organ damage.
I contribute this to the excellent care which I received from having attended the Scleroderma Unit at the Royal Free Hospital, London, December 1998, and, I continue to attend.
I contribute this to the excellent care which I received from having attended the Scleroderma Unit at the Royal Free Hospital, London, December 1998, and, I continue to attend.
Within 30 seconds of my appointment with Dame Professor Carol
Black, I knew that she would use all of her medical expertise to help me get
better and help me realise my dream.
Several years of intense
chemotherapy infusions combined with the immuno-suppressant, mycophenolate,
eventually stabalised what was a very aggressive diffuse form of the disease.
I was also on the stem cell transplant waiting list.
I was also on the stem cell transplant waiting list.
By now, my hero, Professor
Chris Denton had become my lead Doctor, and to whom I am eternally grateful to,
and will forever remain so. His dedication and commitment to his patients and
the scleroderma Raynaud’s global community is superhuman.
Prof Denton helped me realise
my dream. 1st March 2004 I qualified as a self employed practising
barrister in my own right.
Sadly, if you have followed my blog, you will know that my ‘tin man’ body due to the damage from scleroderma, combined with my extreme Raynaud’s sensitivity, makes being ‘under house arrest’, my optimum symptom management location, and the internet my lifeline.
Sadly, if you have followed my blog, you will know that my ‘tin man’ body due to the damage from scleroderma, combined with my extreme Raynaud’s sensitivity, makes being ‘under house arrest’, my optimum symptom management location, and the internet my lifeline.
Read more, here
I therefore feel ‘lucky’ that
I had, in effect, an early diagnosis whereby treatments still remained an
option to me.
Even though managing my symptoms, combined with the damage to my body caused by the scleroderma, makes for a full time job.
Any spare energy or time which I have, is dedicated to the scleroderma Raynaud’s cause.
Even though managing my symptoms, combined with the damage to my body caused by the scleroderma, makes for a full time job.
Any spare energy or time which I have, is dedicated to the scleroderma Raynaud’s cause.
To read my article ‘Ah
great, another day to spend in bed, said no scleroderma Raynaud’s rare disease
patient’, Click here
I have a new dream now – a
Scleroderma Free World, and a Raynaud’s Free World.
I very much hope that this
dream becomes a reality in my lifetime.
I believe that it will, upon investment and global collaboration in research, not just for scleroderma but for the autoimmune diseases as a whole.
I believe that it will, upon investment and global collaboration in research, not just for scleroderma but for the autoimmune diseases as a whole.
Further to my personal
experience, and my new dream, I am passionate that a scleroderma Raynaud’s
diagnosis is not subject to a postcode / ZIP / Country lottery, as to best
practice and care for the patient.
Along with, expert specialist
centres being essential, and medical research being a priority.
The Scleroderma Unit at the Royal Free Hospital is the UK national scleroderma clinical trials centre.
The Scleroderma Unit at the Royal Free Hospital is the UK national scleroderma clinical trials centre.
Due to scleroderma being a
rare disease, and therefore having low patient numbers, clinical trial
recruitment is a challenge.
It is difficult to obtain clinically sound, scientific statistically significant data, with only a small population eligible to take part.
This is why global collaboration is crucial for the sharing of best practice for the scleroderma Raynaud’s patient.
It is difficult to obtain clinically sound, scientific statistically significant data, with only a small population eligible to take part.
This is why global collaboration is crucial for the sharing of best practice for the scleroderma Raynaud’s patient.
Taking part in a clinical
trial is an opportunity to have access to the most advanced potential
therapies. Read more about my clinical trial experience, here
During the lead up to June, I
contacted several patients from around the globe, asking for them to complete a
short questionnaire.
I designed the questionnaire to highlight the global diagnostic approach, as well as, treatment for the global scleroderma Raynaud’s patient, and how their experience could be improved.
I designed the questionnaire to highlight the global diagnostic approach, as well as, treatment for the global scleroderma Raynaud’s patient, and how their experience could be improved.
I am truly humbled to all
those who took part and thank each and every patient who shared their reality,
to help put the spotlight on this life changing, if not life threatening, rare
disease.
Follow the campaign at
Scleroderma News, as well as, my Raynauds Scleroderma Awareness Global Patients
Facebook Page
Living the dream, scleroderma
style, hoping for a cure
#SclerodermaFreeWorld
#RaynaudsFreeWorld
Please donate to my Just
Giving page for the Scleroderma Unit at the Royal Free Hospital where 100% of
your donation will be used for medical research only. Thank You.
An edited version of this article was published here, in my Column with Scleroderma News.
June 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.
Why Research and Patient Profiles?
Scleroderma Awareness Month 2017.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
Scleroderma Awareness Month 2017.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
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