Sunday, 6 August 2017

Silvana Vidmar 14.12.1965 – 22.07.2017. RIP. Scleroderma, Raynaud's, Autoimmune, Rare Disease


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.’ 


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   


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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