
Alexandra
Marler, UK
AUTOIMMUNE DISEASE AWARENESS MONTH 2018
Scleroderma, Raynaud’s, Autoimmune Rare Disease

Name and Location:
Alexandra Marler, UK
Presenting symptoms:
Breathlessness,
cough
Tight skin,
red rash
Reflux
and difficulty swallowing
Chronic
Raynaud’s
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
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

To read more about Alex’s Scleroderma, Raynaud’s,
Autoimmune Rare Disease reality, Click here
Alex was featured in a
BoehringerIngelheim video to raise scleroderma awareness, Click here
Here, Alex and I are living
the dream, together, in 2015.

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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