A New
Year and New Challenges. 2019.
Scleroderma,
Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
A new year is now upon us, with the seasonal holiday festive time a fond
memory.
As patients living with a chronic, progressive and degenerative rare
disease, we know only too well that, there is no holiday from our daily myriad
of symptoms. The holidays can be quite an isolating and difficult time, as
often, it is just not physically possible to interact or 'join in'.
I am super vigilant with avoiding situations which could increase my
risk of catching any viral or other infection.
Although I am now 14 years immunosuppressant and chemotherapy free, my immune system is still very weak.
On a 'normal day', my body feels as though it has flu by way of my continual musculo-skeletal aches and pains.
On a 'normal day', my body feels as though it has flu by way of my continual musculo-skeletal aches and pains.
My 'tin man' body, along with
chronic fatigue and mobility challenges, remain
constant sources of frustration.
Over here in the northern hemisphere we have entered into the season of
winter. Winter is my nemesis season.
Mentally and physically, this is the most challenging time of year for
me. Video
2018 was 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.
My / These unmet clinical needs were replicated during my
global patient profile campaigns for Scleroderma Awareness Month in 2017
and 2018.
Telangiectasia, sclerodactyl hands, and gastrointestinal issues were common symptoms
among patients.
 |
| Telangiectasia 18.9.18 |
I am delighted to have survived this Christmas without experiencing a
medical emergency which required urgent medication.
For, last year, on Christmas Day, I developed a very painful shingles
rash, covering my abdomen and back.
This has kept me under 'house arrest' for most of 2018. And,
disappointingly, forced me to not be able to attend the annual family day at the Scleroderma Unit, The
Royal Free Hospital in May.
I was disappointed to not meet the lovely family of the late Kevin East, RIP 5th Jan 1967 -
7th Jan 2016, who held a charity golf day, and fund raised
£2000.
As well as, I was disappointed to not be able to meet many other very kind and generous fundraisers for medical
research at the Scleroderma Unit, and fellow patients.
Saturday 18th May 2019 is this year's date
for the annual event.
 |
| Prof Chris Denton with Kevin's wife, Debby and Michelle, one of their 3 children |
Please hold Kevin's
family in your prayers at this time, for this is Kevin's anniversary time of
year.
2018 I celebrated 20 years of being a patient
at the Unit.
I am eternally grateful to Prof Chris Denton and the NHS for keeping me alive.
I was also disappointed to not be able to attend the charity boxing
match in memory of Chris Milan.
 |
| RIP Chris |
Huge thanks to
Ben for raising an enormous £34,873.80, in memory of his dad, which will be
used for medical research only, at the Scleroderma Unit.
However, the holiday season did not allow me any respite with my
scleroderma 'added extra' surprises.
On Christmas Day, my right hand flared.
This caused a huge lump of solid and liquid calcium to ooze. The pain was, and
is, nausea inducing. My joints still remain inflamed, swollen and painful, with
the calcium continuing to ooze.
I am right handed, and so, this new calcium challenge, really is on
another level in terms of management. I am not able to stretch or move my hand
without screaming in pain. I must avoid getting the area wet, in the hope, that
the skin tissue does not become infected, thereby, heading into digital ulcer
territory.
Overall, for optimal patient care, the following are essential:
Medical “dream teams"
All I want for Christmas and
for, every day, is: a SclerodermaFreeWorld and a RaynaudsFreeWorld.
Medical research provides immense hope for this
wish to be granted. Video.
Now that I am blessed to be a long-term scleroderma survivor and scleroderma Olympian, I spend most of my spare
time when not tending to my symptoms committed to the
"SclerodermaFreeWorld" and "RaynaudsFreeWorld" wish.
2018, I was honored to have become a patient research ambassador with the National
Institute for Health Research. (Here's a video,
and here's a "Hall of Fame" article.)
I was also honoured to be appointed as a Patient Public Voice in the NHS
England Clinical Reference Group 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.
In 2019, I very much hope to combine these roles to do all that I can in
helping to achieve the SclerodermaFreeWorld and RaynaudsFreeWorld wish.
I very much want to wish you a most prosperous 2019 and Thank you for
sharing the same daily wish in 2019:
a SclerodermaFreeWorld
and
and
a RaynaudsFreeWorld
Living the dream, scleroderma style.
Follow:
Twitter, Instagram, YouTube: @SclerodermaRF and @RaynaudsRf
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.
Please consider leaving a gift in your Will for medical research
at the Scleroderma Unit. Thank You.
An edited version of this article was published here, in my Column with Scleroderma News. January 2019.
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.
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:
@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.
A New
Year and New Challenges. 2019.
Scleroderma,
Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
