The Fun Snatchers
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Those
three words, ‘You have scleroderma’….followed by, ‘and Raynaud’s’ have without
doubt, life changing consequences, if not, life threatening consequences.
In
this article, I discuss the day to day impact which these three words have, in
relation to the lifestyle adjustments and changes required, to respect the full
impact of the symptoms.
Paradoxically,
hearing those words, actually come as a relief, to most scleroderma and
Raynaud’s patients, as evidenced by my ‘patient profile combined with research
campaign’, for June scleroderma awareness month 2017.
As well as, my personal rationale for making the ‘patient profile combined with research campaign’, for June scleroderma awareness month 2017. Week 3.
I am
truly convinced that my personal 20 year experience of living with scleroderma
and Raynaud’s, is contributed to me being diagnosed within a few months of my
initial presenting symptoms, followed by a second opinion at the Scleroderma
Unit expert centre, The Royal Free Hospital, 15 months later.
Whereupon, I was subjected to a rigorous 18month chemotherapy regime which eventually stabalised my symptoms. With my ‘Skin now being cured from scleroderma’, 19 years later.
Whereupon, I was subjected to a rigorous 18month chemotherapy regime which eventually stabalised my symptoms. With my ‘Skin now being cured from scleroderma’, 19 years later.
After
having been told ‘You have scleroderma’, I was then told that I was probably
looking at a maximum of 15months, due to the aggressiveness with which the
disease was attacking my body.
At the time, 1997, I was working in the pharmaceutical industry as a medical representative, as well as, studying towards my barrister qualifications on a distance learning basis. I was advised to give up my dream of being a barrister and to accept my medical fate.
At the time, 1997, I was working in the pharmaceutical industry as a medical representative, as well as, studying towards my barrister qualifications on a distance learning basis. I was advised to give up my dream of being a barrister and to accept my medical fate.
Scleroderma and Raynaud’s the fun
snatchers
On 1st
March 2004 I qualified as a self employed barrister, and stopped the daily 2g
mycophenolate mofetil regime of the previous 6 years.
I am now 13 years immunosuppressant / chemotherapy free. The only medication which I take is bosentan 125mg twice a day, along with Co-Proxamol analgesics for emergencies.
Sadly, the physical requirements of the barrister role were too demanding on my scleroderma and Raynaud’s damaged body.
I am now 13 years immunosuppressant / chemotherapy free. The only medication which I take is bosentan 125mg twice a day, along with Co-Proxamol analgesics for emergencies.
Sadly, the physical requirements of the barrister role were too demanding on my scleroderma and Raynaud’s damaged body.
Although
my level of disease is stable, my day to day reality is dictated by my symptom
demands caused by the damage from the scleroderma, when it was active.
Namely, musculoskeletal pain, GERD involvement, calcinosis and I have extremely sensitive Raynaud’s.
Namely, musculoskeletal pain, GERD involvement, calcinosis and I have extremely sensitive Raynaud’s.
This
combination of symptoms makes for easier management, by me staying at home as
much as possible. In an attempt, to minimise severity, as well as, an attempt
to prevent Raynaud’s attacks.
I also have a strict diet.
Prior to my body developing scleroderma and Raynaud’s, I was a very outgoing social individual. Now, my social life, as well as my working / career life has been superseded by medical appointments taking priority in my diary and depleting my limited energy stores.
I also have a strict diet.
 |
| Hottest day of 2013 - I had to wear Ugg boots and gloves |
Prior to my body developing scleroderma and Raynaud’s, I was a very outgoing social individual. Now, my social life, as well as my working / career life has been superseded by medical appointments taking priority in my diary and depleting my limited energy stores.
I am
a huge fan of Andy Murray, the UK tennis player, who sadly was not able to
defend his Wimbledon title fully this year, due to a hip injury.
I am sure, every scleroderma and Raynaud’s patient can relate to a similar intense disappointment and sadness at not being able to fulfil a desire, due to their body not being up to it.
I am sure, every scleroderma and Raynaud’s patient can relate to a similar intense disappointment and sadness at not being able to fulfil a desire, due to their body not being up to it.
In
particular, I am no longer able to play tennis, a sport which I very much
enjoyed.
Infact, all exercise is extremely challenging for my ‘tin man’ body. I have the utmost respect for my fellow patients who are still able to exercise.
Infact, all exercise is extremely challenging for my ‘tin man’ body. I have the utmost respect for my fellow patients who are still able to exercise.
I
have learnt, over the last few decades, to not focus on what I can no longer do,
and focus on what I can do, and, on what makes me feel good.
I have shared more of my coping strategies on my www.cosmicfairy444.blogspot.co.uk
I have shared more of my coping strategies on my www.cosmicfairy444.blogspot.co.uk
So,
although this party girl is no longer able to be so foot loose and fancy free,
the party has been relocated to my lounge, with the best DJ, and no queue for
the conveniences.
Living
the dream, scleroderma style.
Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.
#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates
An edited version of this article was published here, in my Column with Scleroderma News.
July 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.
The Fun Snatchers
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
No comments:
Post a Comment