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
INDEX to Scleroderma
Awareness 2016 Campaign, Click here
June 2017.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
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.
I
highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
VIDEO
VIDEO
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:
Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is VITAL.
Research
is the key. Abstracts from 2016 World Congress, Click here
The Family Day at the Scleroderma Unit, The Royal
Free Hospital is taking place on the 19th May 2018. Browse the
program, here
This year, I am celebrating 20 years of being a
patient at this world leading expert specialist research centre.
 |
| Sept 2017 |
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.
I am truly humbled and inspired by their work
ethic. 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
diagnosing doctor, that I was looking at a 15month prognosis.
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.
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
Living the dream, scleroderma style.
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
100% of your monies will be used for medical
research purposes only. No wages or admin costs. Thank You.
#HOPE
Last Update: April 2018
