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.
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:
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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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