Living The Dream, Scleroderma Style: In Between Medical
Appointments.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Living with a systemic, chronic, degenerative disease, where the cause
and cure still remain unknown, makes for a diary filled with medical
appointments.
In between which, symptom management is a full time job, in itself.
I have a strict daily routine in place, in an attempt to minimise the
severity of my ongoing symptoms.
However, as every patient will surely agree, no day is exactly the same
in relation to the Pandora’s Box, which the autoimmune rare disease, scleroderma,
diagnosis brings.
Even after 20 years, it still remains an ongoing challenge for me, to
attempt to minimise my symptoms.
My sensitivity is such, that the smallest decrease in temperature,
regardless of how warm it actually is, will trigger an attack in my hands and
toes. My ears and nose may also become involved.
Combined with calcinosis and digital ulcers, this makes for a very
painful and debilitating reality. I highlighted more about this in my article
for Rare Disease Day 2017, the clinical unmet needs.
The British Society for Rheumatology (BSR) held its annual conference
last week in Liverpool.
Sadly, I was unable to attend due to a relapse with my shingles pain,
and a resilient digital ulcer on my right index finger, which has been in situ
since March!
Two courses of flucloxacillin have just about cleared the infection,
bringing along an overgrowth of candida in my gullet. The skin has still not
healed and the slightest touch sets off the most excruciating pain.
A thick, self made, padded bandage with minimal adhesive helps to
protect the very tender, thin, red raw skin.
However, I know that when it comes to digital ulcers, I am very lucky, even
though their pain and management is extremely trying and soul testing.
During the course of my global patient profiles campaign for Scleroderma
Awareness Month 2017, every patient
detailed how digital ulcers were a continual problem to them.
Please include UK patient Deani in your prayers, as she is currently
undergoing treatment for digital ulcers and necrotic tissue which has moved up in
to her arm.
Over the years I have learnt via experience that should I push my body
too much and not respect the demands of the multi complex symptoms, my body
will protest with a vengeance. With fatigue being a constant, unwelcome,
companion.
I was particularly encouraged to see that fatigue and sleep were
subjects included within the recent BSR schedule. Along with several sessions
on Systemic Sclerosis, sharing the most recent data.
I was extremely sad to not be able to attend the conference, especially
as it was practically on my door step! However, as a ‘seasoned’ patient, I know
that I must accept: my symptoms dictate. As well as, the difficulties of travelling with an invisible disability.
Sadly, the lovely Maureen Schotterer from USA, was
called back to her maker last week. Please include her husband George and her
family in your prayers.
There are only a few weeks remaining, until the highlight of our year as
patients – June Scleroderma Awareness Month, and 29th June, being,
World Scleroderma Day.
There are many projects already in the planning for 2018 awareness
#SclerodermaFreeWorld.
I will be updating the global patient profiles, highlighting the urgent need for investment in medical research, to improve our patient day to day reality.
I will be updating the global patient profiles, highlighting the urgent need for investment in medical research, to improve our patient day to day reality.
In celebration for World Scleroderma Day, 29th June, myself
and UK patient Liz Leadbetter, have started a forum for sharing pictures /
images of any craft or item which a patient has made / created, whilst awaiting
in between their next medical appointment.
We will then collate the images to share on World Scleroderma Day,
showing the world how creative our global community is, and raising awareness
at the same time. Please get involved!
In the meantime, this Scleroderma Olympian is in training for the Scleroderma Unit Family Day on the 19th May at the Royal Free Hospital.
Living the dream, scleroderma style.
Follow:
Facebook Page: Raynauds
Scleroderma Awareness Global Patients
Twitter, Instagram, Blogger, You Tube: @SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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.
Thank You.
#HOPE
An edited version of this article was published here, in my Column with Scleroderma News. May 2018.
An edited version of this article was published here, in my Column with Scleroderma News. May 2018.
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.
Living The Dream, Scleroderma Style: In Between Medical
Appointments.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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