Patient Profiles Campaign Index
Scleroderma Awareness Month 2017
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
Each day throughout the month of June, I will be publishing a different patient profile from around the world.
Each
patient has kindly completed a set of questions, highlighting their scleroderma
and Raynaud’s experience so far.
It
is with huge thanks, I offer to all of those patients who have shared their
experience, in the hope, to raise awareness of the scleroderma and Raynaud’s
diagnostic abyss.
Albeit,
progress in research and understanding is improving, slowly. As evidenced by
the launch of the Journal of Scleroderma and Related Disorders, JSRD, last
year, at the 4th World Systemic Sclerosis Congress.
For details
about the 5th World Systemic Sclerosis Congress, Feb 2018, Bordeaux,
France, Click here
At the start of my project, in no way, did I envisage just how humbling this experience would be, to connect with my fellow patients on a global level, with them allowing me, into their day to day reality of living with this diagnosis.
I
have to say, scleroderma patients are some of the most brave and strong people
I have ever come across, in all walks of my life, so far.
And again, I would like to offer my sincere thanks for their support and for sharing the same dream #SclerodermaFreeWorld.
And again, I would like to offer my sincere thanks for their support and for sharing the same dream #SclerodermaFreeWorld.
To
read more about why I chose ‘Patient Profiling and Research’ as the focus of my
2017 campaign, preamble, and, 'Why', Click here
To read Week 1 Synopsis - Unmet Clinical Needs, Click here
To read Week 2 Synopsis - The progress of medical research, Click here
To read Week 1 Synopsis - Unmet Clinical Needs, Click here
To read Week 2 Synopsis - The progress of medical research, Click here
INDEX June Scleroderma Awareness Month 2017 Patient Profiles:
Alice Martins Correia,
Switzerland, DAY 1
 |
| Alice Martins Correia, Switzerland |
Jacob Vidal Davila, USA, DAY 2
Haslina Wannor, Singapore, DAY 3
 |
| Jacob Vidal Davila, USA |
Haslina Wannor, Singapore, DAY 3
 |
| Haslina Wannor, Singapore |
 |
| Sarah Lloyd, UK |
Dr Susan Nyanzi, USA, DAY
5
 |
| Dr Susan Nyanzi, USA |
Deani Baillie, UK, DAY 6
 |
| Deani Baillie, UK |
 |
| Janet Swerbenski, USA |
Vanessa Cummings, UK, DAY 8
 |
| Vanessa Cummings, UK |
Debbie King, CANADA, DAY 9
 |
| Debbie King, CANADA |
 |
| Chris Milan, UK |
Misty Rushing, USA, DAY 11
 |
| Misty Rushing, USA |
 |
| Nicola Whitehill, UK |
Margie Kugler, Australia, DAY 13
 |
| Margie Kugler, Australia |
Denise Holmes, UK, DAY 14
 |
| Denise Holmes, UK |
Jen Wells, USA, DAY 16
 |
| Jen Wells, USA |
 |
| Helena Gaspar, Portugal |
Jennifer Moss, UK, DAY 18
 |
| Jen Moss, UK |
 |
| Christine Wilson, UK |
 |
| Sheryl Bishop, USA |
 |
| Diwakar Rawat, India |
 |
| Jan Petrie Procter, UK |
 |
| Sharon Harris, UK |
Lori Pierce, USA, DAY 25
 |
| Lori Pierce, USA |
 |
| Sarah Jatto, UK |
Patti Pascucci, USA, DAY 28
 |
| Patti Pascucci, USA |
 |
| Wyatt The Warrior, USA |
#SclerodermaFreeWorld #RaynaudsFreeWorld #SclerodermaAwareness
#RareDisease #Hope #Belief
To read more about why I chose ‘Patient Profiling and
Research’ as the focus of my 2017 campaign, Click here
Why Research and Patient Profiles? Scleroderma Awareness
Month 2017, Raynaud's, Rare Autoimmune Disease, Click here
Week 1 Scleroderma Awareness Month, Raynaud's, Rare
Disease, 2017 – Patient Profiles Campaign, Click here
Week 2 Scleroderma Awareness Month, Raynaud's, Rare
Disease, Patient Profiles 2017, Progress in medical research, Click here
Week 3, Medical research areas of current
interest, Scleroderma Awareness Month, Raynaud's, Rare Disease 2017, Patient
Profiles Campaign, Click here
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.
Patient Profiles Campaign Index
Scleroderma Awareness Month 2017
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
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