Chris Milan, UK
AUTOIMMUNE DISEASE AWARENESS MONTH 2018
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
Name and Location:
Chris
Milan from Reigate in Surrey, UK.
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
chemotherapy made no difference.
Further Presenting symptoms:
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.
To read more about Chris’ Scleroderma, Raynaud’s,
Autoimmune Rare Disease reality, Click here
Huge Thanks to Jane, Chris’ wife, who kindly shared
this information about Chris.
My thoughts and prayers go out to Jane, and Chris’
family, especially at this time, one year on, since Chris’ passing.
In memory of his Dad, and to raise vital funds, Ben Milan is holding a charity
boxing night on 15th March 2018 - THIS forthcoming Thursday.
All monies will be shared and donated to the Scleroderma Unit and Children with Cancer.
For tickets info, Click here
To take part in the online auction, Click here
To donate, Click here.
2018.
2020 UPDATE:
Last year, 2019, Ben ran the London marathon in memory of his dad, along with Camilla Kay, now Milan, and Isobel Smith.
I followed them live throughout the race and was blown away by their tenacity.
Between them, the Milan family have raised over £60,000 for research at the scleroderma unit.
HUGE thanks to Ben and the Milan family.
Here is a summary of where the funds will be used.
Scleroderma Family Day
2020
25th
Anniversary Meeting
The Atrium, Royal Free
Hospital, London, NW3 2QG
Chair: Professor Chris
Denton
PROVISIONAL PROGRAMME
09.30 – 10.00 Registration
and Coffee
10.00 – 10.20 Welcome Dame
Carol Black
Prof Chris Denton &
David Abraham
10.20 – 10.40 What
is a Biopsy? Dr Kristina Clark
10.40 – 11.05 Dental
aspects of Scleroderma Prof Stephen Porter
11.05 – 11.25 Gastrointestinal
problems – Dr Fiza
Ahmed
shedding
new light on old problems
11.25 – 11.50 Pulmonary
hypertension and the heart Dr Gerry
Coghlan
11.50 – 12.15 Scleroderma
cohort studies – Dr
Francesco
‘Learning
from our patients’ del Galdo
12.15 – 14.15 LUNCH
BREAK – see below
14.15 – 14.45 25
years of progress – Prof
Chris Denton
from
‘black box’ to ‘positive trials’
14.45 – 15.15 International
speaker – Dr
Madelon Vonk
Scleroderma
Management in Netherlands
15.30 Raffle
Lunchtime Discussions Groups /
Demonstrations include:
Clinical Trials Rachel
Ochiel and team
National Institute of Health Research Christine Menzies
Drug Information / monitoring Pharmacy
Massage Keith Hunt MBE
Pulmonary Hypertension Education / nursing Sally
Reddecliffe/Adele Dawson
Rheumatology Laboratory Research
Laboratory Staff
Scleroderma Education / Nursing Louise
Parker/ Joseph Cainap
Thermography Dr Kevin Howell
SRUK Ollie Scott
Sjogren’s syndrome British
Sjogren’s Society
To Read My Articles:
Gift in My Will, Click here
Planning for the Future, Click here
Rare Disease Day:
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
Read more, here.
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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
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.
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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 overall.
For optimum
patient care, 3 hallmarks preside: 
INVESTMENT in MEDICAL RESEARCH is CRUCIAL.
To read my articles:
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
SCLERODERMA:
Global Patient Profiles 2018 Video, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
 |
| June 2019 |
 |
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
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. Along with the
Raynaud's world trail blazer, Dr Kevin Howell.
I am truly humbled and inspired by their work ethic and commitment to
their patients.
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 original diagnosing doctor, that I
was looking at a 15month prognosis.
 |
| Chat Magazine May 2019 |
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
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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
Raynaud's:
October:
Raynaud's, Click here
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
My thoughts and prayers go out to Jane, and Chris’ family, especially at this time, 3 years on, since Chris’ passing.
HUGE thanks again, to the family for such amazing fundraising efforts for medical research at the scleroderma unit.
#SclerodermaFreeWorld #RaynaudsFreeWorld
My thoughts and prayers go out to Jane, and Chris’ family, especially at this time, 3 years on, since Chris’ passing.
HUGE thanks again, to the family for such amazing fundraising efforts for medical research at the scleroderma unit.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Chris Milan, UK
AUTOIMMUNE DISEASE AWARENESS MONTH 2018
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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