Anne
Mawdsley, UK
Patient
Profiles DAY 30
June
Scleroderma Awareness Month 2017
Anne Mawdsley, UK
I have chosen to make
Anne the focus of the final day of my Scleroderma Awareness 2017 Patient
Profiles Campaign.
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, what will soon be, 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.
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!
 |
| Anne completing her pedalo challenge 11.6.12 |
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 20th
anniversary at Highgrove.
As I highlighted at
the start of this piece, if you had met Anne, you would never have forgotten
her.
Last year, 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
To read more about
Anne, Click here
RIP Anne Mawdsley
31 May 1942 - 12 October 2014
Forever within our
hearts, and whose legacy will live on.
It is with huge
thanks, I owe to ALL of the patients who took part in the Scleroderma Awareness
Month 2017 Patient Profiles Campaign - Research.
Every patient’s
story brought tears rolling down my face, as I put the campaign together.
Which, had not been
envisaged by me, whilst the idea of the campaign was in its infancy. My
Sjogren’s overlap symptoms were on strike for a few/most days during June Scleroderma
Awareness Month!
Living with this
diagnosis makes you dig deep into finding out who you really are, and what /
who, is truly really important to you. As Bob Marley sang, ‘You never know how
strong you are, until you have to be’.
I hope that this
Campaign has been of interest, not just from an educational perspective but
also, from a supportive element to fellow patients.
The Campaign has
highlighted the universal hallmarks for best patient management, treatment and
care.
Namely:
Early
Diagnosis
Expert Specialist
Centres
Access to Innovative
Medicines
As well as, the
Campaign has highlighted universal global patient unmet clinical needs.
Namely:
Raynaud’s / Digital
Ulcers
GERD
involvement
Calcinosis
Fatigue /
Pain
CAUSE and CURE to be
understood #SclerodermaFreeWorld
THANK YOU AGAIN TO
EVERYONE WHO TOOK PART AND TO EVERYONE WHO SHOWED THEIR SUPPORT #SclerodermaFreeWorld
#RaynaudsFreeWorld
To read more about why I chose ‘Patient Profiling and
Research’ as the focus of my 2017 campaign, Click here
Why Research and Patient Profiles? Scleroderma Awareness
Month 2017, Raynaud's, Rare Autoimmune Disease, Click here
June 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.
Anne
Mawdsley, UK
Patient
Profiles DAY 30
June
Scleroderma Awareness Month 2017
Scleroderma, Raynaud's,
Autoimmune Rare Disease. 