Saturday, 10 June 2017

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

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


To read my articles  

Importance of an early diagnosis, Click here 

Taking Part in Clinical Research Trials, Click here

Expert Specialist Centres, Click here 

My Skin is Cured from Scleroderma, Click here 

UK Guidelines for Managing and Treating Scleroderma, Click here

World Scleroderma Day 29th June Click here  


Please donate to help fund medical research at The Scleroderma Unit where 100% of all of your monies will be used for medical research purposes only. Thank You.

DONATE     

Living the dream hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 


Thanks to USA patient Sharon Esposito for sharing her wonderful creativity



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