Sunday, 10 June 2018

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. 
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 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. 

Chris Milan, UK,  RIP 10/6/59 - 4/3/17

Today, June 10th is Chris’ birthday, please hold his wife Jane, and their family, in your thoughts and prayers on this day. Thank You. 'Happy Birthday, Chris'.

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.    
DONATE  
  
To know more about Chris, Click here, to see the Raynauds Scleroderma Awareness Global Patients Facebook Gallery.  
2018 UPDATE:   

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.  

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:
Importance of an early diagnosis, Click here      
Taking Part in Clinical Research Trials, Click here     


The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here    


Expert Specialist Centres, Click here      
  
My Skin is Cured from Scleroderma, Click here       
UK Guidelines for Managing and Treating Scleroderma, Click here        

Fatigue, Click here         

Mobility, Click here      

Diet and nutrition, Click here     
 

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  
#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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