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Chris
Milan, UK, RIP 10/6/59 - 4/3/17
Patient
Profiles DAY 10
June
Scleroderma Awareness Month 2017
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| Chris Milan, UK, RIP 10/6/59 - 4/3/17 |
Chris Milan, UK, RIP
10/6/59 - 4/3/17
June Scleroderma
Awareness Month 2017 Patient Profiles DAY 10
Chris Milan from
Reigate in Surrey, UK was diagnosed with diffuse systemic scleroderma,
Antibodyscl70, in 2014, aged 55.
Dr Jawed, Consultant Rheumatologist at the New Victoria Hospital, local hospital diagnosed him. This was the third medical opinion sought for a diagnosis.
Symptoms had been
ongoing for about 10 months prior to final diagnosis.
Presenting symptoms:
General feeling of unwell, exhaustion, jaundice, compromised liver (shown on blood tests) and stiff joints.
He had always
suffered cold hands and feet but not too extreme.
Chris was a very fit
and active person.
He ran the London
Marathon twice sub 3.40, took part in triathlons, successfully developed and
drove his business forward, cycled Lands End to John O'Groats, Reigate to South
of France, and one end of Sardinia to the other (mountainous and steep climbs).
All this, mostly, cycling 100 plus miles a day.
He became ill within
a week of returning home from Sardinia - in his own words - "the hardest
physical thing he had ever done".
Our opinion was that
this was the trigger for the onset of scleroderma.
The speed with which things progressed was frightening - there was very little response to the cocktail of drugs although they slowed it a little.
The speed with which things progressed was frightening - there was very little response to the cocktail of drugs although they slowed it a little.
The chemotherapy made
no difference.
His main symptoms
were joint pain and stiffness, initially in his hands, but very soon, this
progressed to elbows and upper arms and then his whole body.
This, coupled with
digital ulcers that engulfed his arms and progressed to his legs.
When he first went to
the Scleroderma Unit his skin score was 27/51, in July 2015.
By the time he had
the transplant in February 2017 it was 51/51 – a very aggressive progression.
He was 57 when he
died whilst undergoing a Stem Cell Transplant.
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| Chris Milan, UK, RIP 10/6/59 - 4/3/17 |
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| Jane and Chris Milan, UK |
Huge thanks to Jane,
for sharing Chris’ very brave scleroderma experience, where sadly, his disease
did not respond to any of the current treatment, not cure, options
available.
Please donate to the
Just Giving Page in memory of Chris, where 100% of your donation will be used
to fund medical research at the Scleroderma Unit, Royal Free hospital.
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 2016.
Huge Thanks to Ben for his fundraising efforts in memory of his Dad, Chris.
DONATE
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.
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| 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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