'fairy insights to excite'
I started this blog to share phrases and ideas which help me to feel good whilst living with a 'scleroderma and Raynaud's' diagnosis, to which there is no cure.
Attitude is everything - so pick a good one!
If you have enjoyed this blog please make a donation to help fund vital research into the rare disease scleroderma. Thank You.
#SclerodermaFreeWorld- Imagine That
https://www.justgiving.com/fundraising/sclerodermaunit-royalfree
During the summer of 1997, aged 24, I had begun
to feel quite unwell.
There was not a part of my body which did not
ache and by the autumn, my fingers had become stiff, swollen and shiny.
I went to see my GP who arranged for the
standard rheumatology blood tests as well as an ANA test.
I was then referred to my local Consultant
rheumatologist, with by now, typical scleroderma like symptoms with skin
thickness covering my entire body, which was not only tight, (I could not
stretch my arms out), but very itchy.
I also had difficulty with swallowing / small
mouth and stomach cramps, as well as I would turn blue at the slightest of
draughts.
I was relieved that I finally had a diagnosis
and I was not going to let it take away my dream of being a barrister.
I was then prescribed a cocktail of disease
modifying drugs with plenty of horrendous side effects but no effect on the
disease progression.
By December 1998 I went to see Prof Black at
the Scleroderma centre at The Royal Free NHS Hospital, and continue to be a patient
at the centre, under the care of Prof Denton.
In 2004 I had to give up my career as a
barrister and attend to the full time job of managing my symptoms.
I have a disciplined daily routine to keep my
symptoms under control, including moisturising my skin (symptom reversal
currently at 95%).
I am extremely grateful that I am one of the
lucky ones in that my disease was identified early enough to respond to
treatment, with minimal organ involvement.
I have annual Echo and Lung Function tests and
I take medication for the severe Raynaud’s.
I now have a disciplined daily routine to keep
my symptoms under control, including moisturising my skin (symptom reversal
currently at 95%).
As well as, being respectful of my symptoms eg.
I am always wearing gloves / I have changed my diet and lifestyle (very few
late nights).
I am extremely grateful for the help and
support that The Scleroderma Society charity, as well as The Raynauds and
Scleroderma Association has given to myself and my family.
In particular, the sharing of up to date
treatments, research, survival tips, and gadgets that make the day to day
living, easier to cope with.
As well as, continuing to provide hope that a
cure will be found in my life time.
This article was written for the Raynaud’s and
Scleroderma Association’s Autumn Newsletter 21st October 2014
PLEASE DONATE to the ROYAL FREE CHARITY, to
help fund desperately needed MEDICAL RESEARCH at the SCLERODERMA UNIT, THE
ROYAL FREE NHS HOSPITAL.
#SclerodermaFreeWorld#RaynaudsFreeWorld#Research
#Autoimmune #RareDisease#LifeChanging
Scleroderma Family Day
2020
25th
Anniversary Meeting
The Atrium, Royal Free
Hospital, London, NW3 2QG
Chair: Professor Chris
Denton
PROVISIONAL PROGRAMME
09.30 – 10.00Registration
and Coffee
10.00 – 10.20WelcomeDame
Carol Black
Prof Chris Denton &
David Abraham
10.20 – 10.40What
is a Biopsy?Dr Kristina Clark
10.40 – 11.05Dental
aspects of Scleroderma Prof Stephen Porter
11.05 – 11.25Gastrointestinal
problems – Dr Fiza
Ahmed
shedding
new light on old problems
11.25 – 11.50Pulmonary
hypertension and the heartDr Gerry
Coghlan
11.50 – 12.15Scleroderma
cohort studies – Dr
Francesco
‘Learning
from our patients’ del Galdo
12.15 – 14.15LUNCH
BREAK – see below
14.15 – 14.4525
years of progress – Prof
Chris Denton
from
‘black box’ to ‘positive trials’
14.45 – 15.15International
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 ResearchChristine Menzies
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.
To read about medical research at the scleroderma unit, 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.
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
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, former MEP, for organizing this event in memory of his late wife Carmen,
who sadly passed from Scleroderma.
