Chris
Milan, UK, RIP 10/6/59 - 4/3/17.
Patient
Profiles DAY 10.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
 |
| Chris Milan, UK, RIP 10/6/59 - 4/3/17 |
TODAY is Chris's birthday.
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 |
 |
| 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 know more about Chris, Click here, to see the Raynauds Scleroderma Awareness Global Patients Facebook Gallery. Huge Thanks to Ben for his fantastic fundraising efforts in memory of his Dad, Chris.
DONATE
Current Unmet Clinical Needs 2018:
CALCINOSIS, Click here
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
SCLERODACTYL HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, Click here
GASTROINTESTINAL,
Click here
'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
Global Patient
Profiles Campaign Index, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click here
Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click here
Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient
Profiles Campaign Introduction, Click here
'Being your own
awareness advocate', Click here
Scleroderma Awareness
Month Flashback 2017, Click here
Scleroderma Awareness
Month Flashback 2016, Click here
My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
March 2018 Autoimmune
Disease Awareness Month, Click here
World Scleroderma Day
2017, 29th June, Click here
World Scleroderma Day
2016, 29th June. Origins of the date, Click 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
To view my article 'Why Global Collaboration is Important', Click here
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as:
Early Diagnosis
Expert Specialist Centres
Access to innovative medicines
ALL being, crucial factors for best practice management and care.
To read my articles:
Raynaud's, Click here
This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, 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. Read more, here
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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: June 2018
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