The
Full Time Job of Symptom Management
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Every scleroderma patient
presents with differing symptoms.
No two patients present with the exact same identical set of symptoms.
Diffuse / systemic scleroderma affects the entire body, making for a multi-disciplinary medical team paramount, for best patient optimum care.
Attending and preparing for medical appointments, is a full time job, even when the symptoms have stabalised.
No two patients present with the exact same identical set of symptoms.
Diffuse / systemic scleroderma affects the entire body, making for a multi-disciplinary medical team paramount, for best patient optimum care.
Attending and preparing for medical appointments, is a full time job, even when the symptoms have stabalised.
Over here in the UK, we are
blessed with an extremely committed and dedicated NHS scleroderma medical team.
I wrote about my ‘scleroderma medical dream team’, here
I wrote about my ‘scleroderma medical dream team’, here
I wrote about my annual
monitoring tests, here
Not only does a scleroderma
diagnosis bring a change in the body’s capacity to function, but also, a
drastic change in lifestyle, by way of no longer being physically able to
participate in tasks and hobbies which were once, a source of joy and
remuneration.
On a personal level, there is
not a day which goes by where I do not think of my ‘old life’ as a practising
barrister, appearing at various crown and county courts, representing and
advising clients.
However, being realistic, I must
respect my symptoms, in an attempt to minimise their severity.
This includes my daily skincare routine, which has contributed to my recent medical breakthrough ‘my skin is cured from scleroderma’, as well as, my daily juice smoothies and strict diet, Click here
This includes my daily skincare routine, which has contributed to my recent medical breakthrough ‘my skin is cured from scleroderma’, as well as, my daily juice smoothies and strict diet, Click here
On Dec 8th 2016, I was live on the Scleroderma News facebook page, talking about my recent skin reversal, as well as, I shared some of my scleroderma survival tips.
This was my live debut, and although my phone signal brought about an earlier finish than planned, I very much enjoyed the experience, and I was delighted with the fantastic audience who joined me live. THANK YOU
My sensitivity to the
slightest change in temperature with my Raynaud's symptoms, makes me very much
under house arrest, in an attempt to prevent a Raynaud's attack. I wrote about this, here
Having been a scleroderma
patient for 19 years now, it is my view, further to my own personal experience,
combined with my observations of the global scleroderma community, that,
Scleroderma turns ‘social butterflies’ and the ‘life and soul of parties’ into
shadows of their former, older self.
This is not just exclusive to
scleroderma, this is a reality of the chronic illness patient and any patient,
whether it be flu or any other transitory ailment, whilst the body recovers.
Sadly, for some scleroderma
patients, the disease process is too aggressive for their body to recover from
irreversible damage which then becomes life threatening.
This is why, an early diagnosis is essential for a more favourable outcome to the scleroderma patient. I wrote more about this, here
This is why, an early diagnosis is essential for a more favourable outcome to the scleroderma patient. I wrote more about this, here
On October 31st 2016, the UK Government published an open consultation on ‘Work, health and disability green paper: improving lives’.
A ‘green paper’ is a
preliminary report of government proposals that is published in order to
provoke discussion.
The Government is inviting comment on its Work, Health and Disability
Green Paper, which,
‘outlines how disability or a health condition
should not dictate the
path a person is able to take in life – or in the
workplace.
What should count is a person’s talents
and their determination and aspiration to succeed’.
This runs until 17th
February 2017.
I would urge every UK patient and non-patient alike, to add their view to this consultation.
I would urge every UK patient and non-patient alike, to add their view to this consultation.
For most scleroderma patients,
the physical disability aspect of their diagnosis is one of many challenges
which their daily reality poses.
The hidden, sometimes invisible, challenges include chronic fatigue and pain.
Both, can not be underestimated with the devastation that they can bring, alone or combined, on a day to day basis, to the scleroderma patient.
I wrote about FATIGUE, here, PAIN and HAIR LOSS, here
The hidden, sometimes invisible, challenges include chronic fatigue and pain.
Both, can not be underestimated with the devastation that they can bring, alone or combined, on a day to day basis, to the scleroderma patient.
I wrote about FATIGUE, here, PAIN and HAIR LOSS, here
Since it is the holiday time
season, I would like to take this opportunity to wish you and your family a
very happy festive time, feeling good.
Unfortunately, the full time job of being a scleroderma patient does not allow for annual leave or a ‘holiday’ from the symptoms, yet.
Investment in medical research combined with patient interaction by way of spreading awareness and involvement is key for a permanent scleroderma holiday of the future.
Unfortunately, the full time job of being a scleroderma patient does not allow for annual leave or a ‘holiday’ from the symptoms, yet.
Investment in medical research combined with patient interaction by way of spreading awareness and involvement is key for a permanent scleroderma holiday of the future.
My Christmas wish is that 2017
will bring about the reality of #SclerodermaFreeWorld #RaynaudsFreeWorld.
Dreaming big, with my job
today ‘to simply get better’…
Living the dream, scleroderma style.
An edited version of this article was published here, in my Column with Scleroderma News.
December 2016.
Planning for the Future, Click here
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
Living the dream, scleroderma style.
An edited version of this article was published here, in my Column with Scleroderma News.
December 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.
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.
The
Full Time Job of Symptom Management
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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