Saturday, 10 March 2018

Chris Milan, UK. AUTOIMMUNE DISEASE AWARENESS MONTH 2018. Scleroderma, Raynaud’s, Autoimmune Rare Disease


Chris Milan, UK
AUTOIMMUNE DISEASE AWARENESS MONTH 2018
Scleroderma, Raynaud’s, Autoimmune Rare Disease



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.   

Wishing Ben the best of luck for a fantastic event, which Prof Denton will be attending. So, not just the boxing, to look forward to!   


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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