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Silvana Vidmar
14.12.1965 – 22.07.2017 |
Silvana Vidmar
14.12.1965 – 22.07.2017
It is with the deepest of sadness, with which I write this
post about my lovely Australian scleroderma patient friend Silvana.
I was blessed to be introduced to Silvana, over 7 years
ago, via her, now mine, beautiful friend, Cristina, who had ‘found me’ via
social media further to a post I had written about scleroderma.
As with most scleroderma patients, Silvana and I instantly
connected with each other, and enjoyed a very warm friendship, albeit we lived at opposite sides of the world.
In particular, we would make extra special contact on the
winter solstice and the summer solstice.
For, on this day, we would be
experiencing the opposite of weather temperatures to each other.
Making my
favourite day to be the 21st June, and Silvana’s favourite day to be
the 21st December, due to me being in the northern hemisphere and
Silvana situated in the southern hemisphere.
I included my special friendship with Silvana in a few of
my articles:
Sadly, Silvana was not well enough to take part in my
recent ‘patient profiles research’ campaign for scleroderma awareness 2017.
Silvana will always hold a special place in my heart.
Her memory will most definitely live on by the global
scleroderma and Raynaud’s community.
I feel extremely blessed to have had such a special
friendship with Silvana, and have immense gratitude to Cristina for bringing us
together, whom, has kindly written the following, about our lovely friend Silvana:
‘Silvana was diagnosed with Raynaud’s and Scleroderma in
2000.
She surpassed her prognosis by 7 years.
She came from a close, loving family and was the only girl
of 4 children.
She travelled extensively and never shielded away from
adventure. She was involved in sport all of her life, until the illness became
debilitating. She even volunteered as an interpreter at the 2000 Olympics.
Her achievements were many and varied, but it never showed to those who did not know her, as Silvana was quiet, unassuming and ever
so humble.
To we who were close to here, she was a devoted, non
judgemental and loyal friend.
A tower of strength
and positivity in the face of adversity, rarely saying how the illness made her
feel, because pity did not exist in Silvana’s world.
Silvana’s integrity, courage, loyalty and loving heart will
live on in all who she touched.’
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| Silvana and Cristina shortly after Silvana had first been diagnosed with Scleroderma |
RIP SILVANA VIDMAR
#SclerodermaFreeWorld
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
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
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
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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:
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 Day Patient Voice
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
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
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
Google Plus: Raynauds Scleroderma Awareness Global Patients
#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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