Expert Specialist
Centers
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
Attendance at an expert
specialist center is an essential requirement for the best practice of care and
treatment for the scleroderma Raynaud’s patient, and for the rare disease
patient, in general.
The experience, knowledge and
understanding of the specialist medical expert is not only of comfort to the
patient, but essential, for an early diagnosis and optimum patient care and
implementation of a best care pathway.
An early diagnosis, is crucial to the scleroderma patient, in the
hope that no life threatening irreversible damage presents, and that treatment
options still remain a viable option.
I focussed on the relevant
diagnostic tests for scleroderma in Day 5 of my Scleroderma Awareness Month
2016 Campaign.
Expert specialist centers
offer a number of advantages to improve the rare disease patient experience,
ranging from best patient care, to the production of patient registries for
research purposes, to develop improved treatments and understanding of the cause.
Data collection can show
commonalities seen in the patient population, providing an understanding as to
disease progression, and a basis for research.
These registries, must, out of necessity to the rare disease patient, be a part of a global research network.
These registries, must, out of necessity to the rare disease patient, be a part of a global research network.
Exchange of best practice
globally, is paramount to the rare disease and scleroderma patient, where there
is currently no cure, and where there is a large vacuum and medical need, for
an improvement in treatments and disease modifying agents.
Time is a luxury in the life of a rare disease, and particularly so, in the scleroderma, patient.
Time is a luxury in the life of a rare disease, and particularly so, in the scleroderma, patient.
The Journal of Scleroderma and
Related Disorders (JSRD) was launched at the 4th Systemic
Sclerosis World Congress in Lisbon, 2016, hosted by the World Scleroderma Foundation.
The 5th Systemic Sclerosis World Congress is to take place in Bordeaux, France, February 15-17 2018.
The 5th Systemic Sclerosis World Congress is to take place in Bordeaux, France, February 15-17 2018.
The Journal of Scleroderma and
Related Disorders is most welcome to the global scientific scleroderma
community, as well as, the scleroderma global patient community, as, its
contents demonstrate the global sharing and networking of scleroderma research.
Read more: Vol 1 Number 1 and Vol 1 Number 2
Read more: Vol 1 Number 1 and Vol 1 Number 2
Expert specialist centers also
serve as a hub for patients to meet with others who are going through the same,
similar experience, even though, no two scleroderma patients present with the
exact same set of symptoms.
The expert specialist center provides not only the best patient care, but also, an invaluable opportunity to share coping and management techniques, alleviating a little of the isolation experienced by the rare disease, scleroderma patient.
To view my article ‘Living the
dream, being your own scleroderma Raynaud’s patient advocate', Click here
To view ‘Systemic Sclerosis –
A Patient’s Perspective’, the presentation which I gave at the Bristish Society
for Rheumatology BSR annual conference, in 2015, Click here
The European Rare Diseases
Organisation (EURORDIS) provides the following helpful criteria for
the designation and evaluation of expert centers:
‘Each country to
establish a procedure to define and approve designation criteria and a
transparent designation process:
· Capacity to manage rare disease patients and provide expert advice;
adhere to good practice guidelines for diagnosis and care
· Patient access to a multidisciplinary team of experts (integrating
medical, paramedical, psychological, and social needs)
· Assure quality of care, participation in internal and external quality
schemes, propose quality of care indicators
· Proven expertise documented by annual volume of referrals, second
opinions, publications, grants, teaching and training activities
· Participation in research activities, data collection, clinical trials
if applicable
· Organisation of collaborations to assure the continuity of care between
childhood, adolescence and adulthood, if relevant
· Organisation of collaborations to assure the continuity of care between
all stages of the disease’
An expert specialist center is at the nucleus of this.
I focussed on the Scleroderma patient Healthcare DreamTeam on Day 30 of Scleroderma Awareness Month 2016 Campaign.
I
am eternally grateful to be a patient at the center of expertise, the
scleroderma unit at the Royal Free Hospital in London, headed up by Professor
Denton.
This world class center of expertise, without a doubt, is a global leading light in the scleroderma global research field.
This world class center of expertise, without a doubt, is a global leading light in the scleroderma global research field.
I
know that my success of still being around, to have now transformed into being
a scleroderma parrot, is attributed to the world class healthcare and treatment
which this expert center provides, as well as the superhuman medical expertise
of Professor Denton.
Over
the last two decades, I have taken part in several clinical trials conducted by
the Scleroderma Unit, led by Prof Denton. To read more about this, Click here
Living the dream, scleroderma style, hoping for a cure....
Living the dream, scleroderma style, hoping for a cure....
'My Skin is Cured From Scleroderma' 19 years post diagnosis, Nicola Whitehill, 30.11.16 |
An edited version of this article was published here, in my Column with Scleroderma News.
July 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.
#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.
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.
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:
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@RaynaudsRf
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@RaynaudsRf
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#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.
Expert Specialist
Centers
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
Are there any of these centers in the States?
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