Anne Mawdsley, UK
AUTOIMMUNE DISEASE AWARENESS
MONTH 2018
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
I chose to make Anne the focus of
the final day of my Scleroderma Awareness 2017 Patient Profiles
Campaign and thus, the final day of Autoimmune Awareness 2018.
June Scleroderma Awareness Month
2017 Patient Profiles – DAY 30 Click here
Without a
shadow of a doubt, the entire global scleroderma and Raynaud’s community are
eternally indebted to Anne for her tireless fundraising and relentless
awareness raising, having set up the Raynauds & Scleroderma Association in
1982.
Like most
scleroderma and Raynaud’s patients, Anne was a character who you would never
forget, after first meeting.
Her zest
for life and ‘can do’ attitude, regardless of living with a body which had been
consumed with the diagnosis for decades, was frankly, extraordinarily
superhuman.
I accept
that there are no two scleroderma and Raynaud’s patients who present with the
exact same set of symptoms, and so, direct individual patient comparisons can
not be used as an accurate, scientific measure of outcome prediction or
individual symptom severity.
But, by
being an example of how to live with this diagnosis with respect for the
symptoms, Anne showed that it can be done.
This has
given me tremendous strength in persevering through some of my more challenging
days - 365 days of the year, over the last, 20 years!
And, encouragingly,
the ‘long term’ patients included within my Scleroderma Awareness Month 2017
Patient Profile Campaign, also show that it is possible for the disease to
become latent, manageable, and, in my personal experience, reversed / stabalised.
For, 19
years post diagnosis, on 30th November 2016, Prof Chris Denton
confirmed that ‘my skin has now cured from scleroderma’.
However,
I was lucky – I had an early-ish 'early' diagnosis where treatments to suppress the symptoms (not a
cure), still remained a viable option to me, even though my name was included
on the stem cell transplant list, during this time.
Consequently,
through early-ish intervention, I have minimal internal organ damage other than
severe GERD and MSK joint pain as my most severe symptoms, making for my full
time job.
From
first being diagnosed, initial diagnosis, back in Autumn 1997, Anne was of huge support to
my family and I.
Although,
for my first decade of living with the diagnosis, my family had more contact
with Anne and the RSA than I, as I was still not ready to talk so ‘matter of
factly’ about the diagnosis, and how it had turned my world upside down and
shattered my dreams.
Anne
created and set up the RSA in 1982, which included an annual conference aimed
at patients and families alike.
I know that my family benefited greatly from
the information provided at this forum, as well as, were helped with their
understanding, by meeting others in the same ‘scleroderma boat’.
Over the
years, I watched Anne, each year, challenge herself and her body, with the most
‘crazy’ fundraising events, which she subjected her body to.
One such
event was a sleigh ride with huskies in Finland, which the scleroderma medical
genius trailblazer, Prof Chris Denton, had strongly advised
against!
Another
event, and, sadly, the last time where I saw Anne, was her pedalo challenge
down Lake Windermere, June 11th 2012, with an actor from the BBC1
drama ‘Eastenders’.
Although
it was an early summer’s day, the temperature thought otherwise, and by the
finish line, Anne was shivering with cold.
But, hats off to Anne, she DID it,
with her devoting and loyal husband, Harry, supporting her throughout. I often
joked with Anne that ‘I needed a Harry’ as their unconditional love for each
other was so heart warming and endearing.
The photo
below shows Anne at the finish line. I am on the right of the photo, holding my
white dog, Mitzy, as the swans were tying to attack her!
|
||
It was a
great day, to be able to share 'the moment' with Anne, and, in one of my
favourite places in the world, even though the temperature was rather
refreshing for a Raynaud's and scleroderma patient!
I also had
the opportunity to meet the lovely fellow patients Bev Myers and Hannah Gray.
Anne was great at bringing everyone together, united by our rare diagnosis.
I have
written about ‘Living the dream being your own Raynaud’s and Scleroderma
advocate’ here, a role which I am truly humbled by.
I owe
huge thanks to Anne for developing me into such a scleroderma and Raynaud’s
parrot without me realising, at the time!
Anne was
good like that – she told me that she had even got Prince Charles to agree to
sign her book when he planted a tree in celebration of the RSA 20thanniversary at Highgrove.
As I
highlighted at the start of this piece, if you had met Anne, you would never
have forgotten her.
In 2016, driven by Anne’s work, I set up this blog space as well as a Facebook
page and a google plus community, with all donations going direct to fund medical
research at the Scleroderma Unit, The Royal Free Hospital, led by Prof Chris
Denton.
It is
with deep sadness that I am writing this profile, however, I know that Anne is
in a pain free, scleroderma and Raynaud’s free, place now.
I am
truly grateful for her friendship and all that she did to pave the way to
improve the landscape for patients in so many aspects.
This was
highlighted and recognised within the P152 Poster ‘Optimizing Scleroderma
Centers of Excellence: Perspectives from Patients and Systemic Sclerosis (SSc)
Experts’ presented at the 4th Systemic Sclerosis World Congress held
in Lisbon last year.
With an acknowledgement 'dedicated to the memory of
Anne, founder of the Raynauds and Scleroderma Association UK, who raised over
10 million pounds for SSc research, education and advocacy in her lifetime.'
P152
Poster is included within Volume 1 Number 1 of the Journal of Scleroderma and
Related Disorders, and can be downloaded to view, here
RIP Anne
Mawdsley, 31 May 1942; died 12 October 2014
Forever
within our hearts, and whose legacy will live on.
An edited version of this article was published here, in my Column with Scleroderma News.
March 2018.
INDEX to patients
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, make a donation 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, make a donation here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
Anne Mawdsley, UK
AUTOIMMUNE DISEASE AWARENESS
MONTH 2018
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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