Thursday, 28 June 2018

Kevin East, RIP 5th Jan 1967 - 7th Jan 2016. Scleroderma Awareness Month 2018. Raynaud's, Autoimmune Rare Disease

Kevin East.
RIP 5th Jan 1967 - 7th Jan 2016.

Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease. 



As told by Debby, Kevin’s wife:

‘I am so proud of my husband and how brave he was.

Kevin had a very rare and aggressive form of diffuse scleroderma.

He managed to smile through it all.

As a family, we have met lots of amazing people on our journey.

We are planning lots of events to help raise awareness and money for this rare condition.

Thank you for all of the kind messages and support which we have received.

Kevin was so brave. We have lost a wonderful husband, best friend and dad. We miss him dearly. 


 
I was worried about allowing his pictures to be published and didn't want to upset anyone, but the kind words, have been amazing, Thank you again'.  

To view Kevin’s photo album on the Raynaud’s Scleroderma Awareness Global Patients, Facebook Page, Click here    

Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
I was very disappointed to have missed Prof Chris Denton presenting a plaque to Debby, and Michelle, their daughter, at the recent family day at the Scleroderma Unit.

Debby, her family, friend Ryan and other friends, organised a charity golf day last summer.

An amazing total of £2000 was donated for medical research at the Scleroderma Unit, The Royal Free Hospital. 


 
The plaque is to be placed on the side of a specialised freezer unit used for medical research, which the donation money helped to purchase.

Huge thanks and eternal gratitude go to Debby and Ryan for such a kind and generous donation.

Due to the success of the day, the event is to be held as an annual extravaganza, in Kevin’s memory.

I had the pleasure of meeting Kevin, at the Scleroderma Unit, several months prior to his passing. We were at the medical imagery department, having photographic images taken of our disease progression.

Seeing the tightness of Kevin’s skin, took me back to my initial year of diagnosis, 1997.

I remember showing Kevin that I could now outstretch my arms and my skin was slowly regaining its elasticity.

We joked together that, at least we now had a ‘claim to fame’, as Prof Chris Denton had requested the images, with view for future use within a hardback educational book about scleroderma.

This aspect of fellow patients dying from their disease progression, is exceptionally heart breaking and hard for me, to take in, and of course, my prayers are with their families.

However, I know that I am blessed to have made it to my 21st year.

This super charges my personal efforts in utilising my skills in the best way which I can to help achieve the / my ultimate dream – a Scleroderma Free World.
 
Huge thanks to Debby, family, Ryan MacDonald and other friends, for their amazing fundraising donation and their fundraising efforts.
 

 
 
 
 
To read my articles: 
 
Current Unmet Clinical Needs 2018, Click here 
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
 
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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