Alexandra
Marler, UK
Patient
Profiles DAY 26
June
Scleroderma Awareness Month 2017
Raynaud's, Autoimmune Rare Disease
 |
| Alexandra Marler, UK |
Name: Alexandra Marler
Location: Haslemere, Surrey UK
Diagnosis:
Systemic Sclerosis
Pulmonary Fibrosis
Raynaud’s
Polymyositis
Rheumatoid Arthritis
Pulmonary Fibrosis
Raynaud’s
Polymyositis
Rheumatoid Arthritis
Year
of diagnosis: Polymyositis
1989, Scleroderma etc 2000
Age
at diagnosis: 22 years
old, for Polymyositis and early 30s for Scleroderma
Where
/ who diagnosed you?:
Professor Black at the Royal Free Hospital, London
Professor Black at the Royal Free Hospital, London
What
were your presenting symptoms?:
Breathlessness, cough
Tight skin, red rash
Reflux and difficulty swallowing
Chronic Raynaud’s
How
long did it take for you to be diagnosed after first symptoms?
I was having Scleroderma symptoms in 1990 so nearly
ten years.
Current
reality:
I am not working, and my life is spent managing
this disease and trying to minimise its progression. I do manage still to have
a social life, though it is reduced.
Please
describe your current symptom involvement and management, including any
treatments taking and taken.
I
currently take:
Mycophenolate
Mofetil
Rituximab
infusions
Prednisilone
Esomeprazole
Citalopram
Sildenafil
Pain
relief meds
Supplementary
Oxygen at 2 litres on exertion
 |
| Fibrosis to Alex's left lung |
 |
| metal pins in Alex's left wrist |
 |
| Metal pins in Alex's back |
What
are your 3 biggest current challenges due to your diagnosis?
My biggest challenge is my lung disease and getting
out of breath and tired
Followed by my joint disease, with pain and
inflammation
In fact, general pain and exhaustion is a factor
that covers everything
 |
| Raynaud's |
 |
| foot ulcer |
What
are your 3 top tips for living with your diagnosis?
Self
Care – having massages, meditating, healing, spending time moisturising my skin
and hands, AND, doing things which make me happy
Saying
No to things and people in order to stay rested
Informing
friends and family, where possible, of what living with this disease means
What
are your 3 wishes for the future?
Earlier diagnosis for people
A cure
For me, some way to get more out of life whilst
coping with this disease
Huge thanks go to Alex for
sharing her scleroderma reality and experience in such detail, for scleroderma
awareness month.
Alex was recently featured in
a BoehringerIngelheim video to raise scleroderma awareness, Click here
I was honoured to have been a
fellow prize winner with Alex, in 2015.
Alex won The Raynaud’s
Scleroderma Association and The Scleroderma Society’s art competition, with her
image being used as the front cover for the patient magazine.
I was honoured to be the first
and last recipient of ‘Volunteer of the Year’.
Here we are living the dream,
together, and thanks to the very brave UK patient Hollie Owen for sharing her photographer skills:
 |
| Alex and me, June 2015 |
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
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