Christmas
Holiday Wishes and a New Year to Celebrate.
Scleroderma,
Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld #SclerodermaFreeWorld The seasonal festive holiday time is almost here.
My little dream team are getting in the festive spirit by wearing their Christmas jumpers.
Video
As patients living with a chronic debilitating, autoimmune rare disease, we know all too well that, there is no holiday from our day to day reality.
Managing the numerous and complex symptoms makes for a full time job.
 |
| Sept 2017 |
Recently, I celebrated my 20th year since first having dragged my 'tin man' body, to the Scleroderma Unit at The Royal Free Hospital in London, UK.
I am hugely grateful to Dame Prof Carol Black, Prof Chris Denton and the NHS, for keeping me alive.
At the time of my initial diagnosis in September 1997, I was told that I had a 15month prognosis, due to the aggressive attack, which the diffuse form of the disease, was having on my body.
My wish at that time was to achieve my personal
career goal of becoming a barrister, a 'Learned Friend'.
 |
| Graduation photo July 2001 |
This photo was taken when I was 'called to the Bar'
at Gray's Inn in July 2001.
This was further to my
postgraduate diploma in law and a year spent at 'Bar School'.
I then had to
shadow several barristers to complete my 'hands on' training. I am eternally
grateful to the late Ross Fitzpatrick (Mungo) and David Herbert QC for their
learned Counsel and friendship during this time.
1st March 2004, further to 7 years of treatments (chemotherapy and immunosuppressants),
whilst studying and training, my wish was granted. Prof Denton was extremely
supportive throughout this time, helping me achieve my then wish.
I am now 14 years chemotherapy / immunosuppressant free.
I take Bosentan for my Raynaud’s and I control my GI symptoms with a strict Diet.
Over here in the northern hemisphere, the season of winter has arrived.
Winter really is my nemesis time of year. 'House arrest' is my only option, in an attempt to minimise my Raynaud's flares. Prevention is better than cure. Infact, prevention is crucial, since there is no cure. Video.
However, I know that for my fellow patients, Margie, living in the southern hemisphere, this is their favorite time of year! Sadly, RIP my lovely friend Silvana.
By the time winter sets in, I am constantly cold. This is accompanied with continual, relentless exhaustion, lethargy, and pain, causing immense frustration.
However to look at me, people kindly tell me, "you look so well".
I wish that my body could feel warm all year round. Unfortunately, I must wear Ugg boots and gloves on the most hottest of days, in an attempt to prevent a Raynaud's flare.
 |
| Hottest day of 2013 |
This year, 2018, has been particularly challenging for me due to
extra complications such as skin cancer, dental issues, calcinosis, and an index finger
ulcer.
I am still fragile from having started the year with shingles.
I am still fragile from having started the year with shingles.
These unmet clinical needs were replicated during my global patient profile campaigns for Scleroderma Awareness Month 2017
and 2018.
Telangiectasia, Sclerodactyl hands and Gastro Intestinal issues were also common symptoms, amongst patients.
All I want for Christmas is for my Christmas / daily wish: a 'SclerodermaFreeWorld' and a 'RaynaudsFreeWorld', to be granted,.
Medical Research provides immense hope for this wish to be granted.
Now that I am blessed to be a long term scleroderma survivor / scleroderma Olympian, I spend most of my spare time when not attending my symptoms, committed to the 'SclerodermaFreeWorld' and 'RaynaudsFreeWorld' wish.
This year, I am honored to have become a patient research ambassador with the National Institute for Health Research. video. 'Hall of Fame' article.
Recently, I was appointed a Patient Public Voice on the NHS England CRG for Specialised Dermatology.
This is in
addition to my NHS England CRG Specialised Rheumatology role, and my patient
expert roles with the European Medicines Agency.
Since this is my last article for my column this year, I very much want to wish you a fairy happy Christmas holiday time, and a most prosperous 2019, feeling good.
Thank You for sharing the same daily wish in 2019:
'SclerodermaFreeWorld'
'RaynaudsFreeWorld'.
2019 is already looking to be a very busy year with exciting times ahead, for this wish to be granted.
Living the dream, scleroderma style.
Follow:
Facebook: Raynauds Scleroderma Awareness — Global
Patients
Twitter: @SclerodermaRF and @RaynaudsRf
Google Plus: Raynauds scleroderma awareness global
Use the hashtags #SclerodermaFreeWorld and
#RaynaudsFreeWorld.
Please donate to help fund medical research at
the Scleroderma Unit of the Royal Free Hospital,
London.
One-hundred percent of raised funds will be used
for medical research purposes only. Thank you.
Living the dream, scleroderma style.
An edited version of this article was published here, in my Column with Scleroderma News. December 2018.
To read my articles:
Raynaud's:
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
here
To read My ‘Invisible
Disability’ experience, Click here
Facebook Page: Raynauds Unit Royal Free Hospital
Twitter: @RaynaudsRf
SCLERODERMA:
This year, 2018, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
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
diagnosing doctor, that I was looking at a 15month prognosis.
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
Global Patient
Profiles Campaign 2018 Index, Click here
Global Patient
Profiles Campaign 2018 Video, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click here
Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click here
Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient
Profiles Campaign Introduction, Click here
'Being your own
awareness advocate', Click here
Scleroderma Awareness
Month Flashback 2017, Click here
Scleroderma Awareness
Month Flashback 2016, Click here
My 2016 Scleroderma Awareness Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
March 2018 Autoimmune
Disease Awareness Month, Click here
World Scleroderma Day
2017, 29th June, Click here
World Scleroderma Day
2016, 29th June. Origins of the date, Click 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
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
To view my article 'Why Global Collaboration is Important', Click here
RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
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.
for the illumination of the rare disease patients’ plight.
Rare Disease Day 2018, Research - Taking Part in
Clinical Trials, Click here
Becoming a Patient Research Ambassador for the NIHR, 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
Becoming a Patient Research Ambassador for the NIHR, 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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
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:
Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community.
Follow:
Facebook Page: Raynauds Scleroderma Awareness Global Patients
Twitter:
@SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#IamScience
#SclerodermaFreeWorld #RaynaudsFreeWorld
December 2018.
December 2018.
Christmas
Holiday Wishes and a New Year to Celebrate.
Scleroderma,
Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld #SclerodermaFreeWorld 