Saturday, 10 June 2017

Chris Milan, UK, RIP 10/6/59 - 4/3/17, June Scleroderma Awareness Month 2017, Raynaud's, Autoimmune Rare Disease, Patient Profiles DAY 10


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

Patient Profiles DAY 10

June Scleroderma Awareness Month 2017

Raynaud's, Autoimmune Rare Disease 
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 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. 
 
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.  
 
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   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, 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   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

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    



World Scleroderma Day 29th June 2016, 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:
The theme to this years Rare Disease Day is Research

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 UK Parliamentary Reception   


2017 Rare Disease Day Flashback  
  


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


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


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - 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  


#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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