Sunday, 1 July 2018

Scleroderma Awareness Raising 2018, Medical Research Investment. Scleroderma, Raynaud's, Autoimmune Rare Disease.

Scleroderma Awareness Raising 2018 - Medical Research Investment 
 
We are now over half way through our awareness month of June, culminating with World Scleroderma Day on 29th June. 

 

As a long term survivor patient of our rare disease, it has been very exciting for me to see the vibrant 2018 Scleroderma Awareness Month activity, which is taking place over many social media platforms.

Scleroderma Canada and Toronto have arranged for several well known buildings and tourist attractions to be lit in teal, over the course of our awareness month. The highlight being the Niagra Falls on World Scleroderma Day. This will be streamed live via their Facebook Page.

So far, as is the same every year, in my view, our Canadian scleroderma friends continue to show the rest of the world, how to raise awareness, and best of all, get laws changed, for improving patients lives.

This is why I am obsessed, (if you had not already noticed, and, I am the first to admit this obsession), with raising awareness about financial investment in medical research and the ramifications which this poses.

Not only for discovering the cure and cause, but also for improving the day to day reality of the rare disease patient’s life, in the meantime.

This includes access to innovative medicines which need to be fast tracked through the regulatory process to ensure maximum patient benefit. 

Time is a luxury for the rare disease patient in general, and especially so, for the Scleroderma patient.

An early diagnosis is crucial to prevent any potential life threatening damage.

I am soon to be entering my twenty first year, since first having heard those life changing words ‘You have scleroderma’.

I am eternally grateful for the early-ish diagnosis which I received. Followed by, the outstanding world class care, which, I continue to receive, at the globally renowned scleroderma unit expert centre.

In December 2018, I will be celebrating my twentieth year anniversary of being a patient at the unit. I know that I am an extremely lucky scleroderma patient, in that I am still alive.

Albeit, scleroderma has turned my body into being the real life 'tin man'. Forcing me to respect the multi systemic symptoms and damage caused by the disease, when it was at its most active, 1997 – 2004, thereby, forcing me to give up full time work.

I remain eternally grateful to Dame Professor Carol Black and Professor Chris Denton, whose medical expertise and care, most definitely contributed greatly, to me achieving my personal childhood goal of becoming a barrister, in 2004.

At the same time, I discontinued my 2g mycophenolate mofetil daily dose of the previous five years. Within a few months, I experienced a flare in my symptoms and had to accept that the physical demands of the role were too much for my scleroderma damaged body. 


I have detailed more about my patient experience and journey, on Day 12 of my global patient profiles campaign, for Scleroderma Awareness Month 2018.

My personal experience, is the precursor and reason for me starting my global patient profiles campaign, last year.

I am extremely grateful to all of the patients who have kindly shared their experience for awareness purposes, as well as, I owe huge thanks to the families of the patients whom, sadly, have died from the disease. INDEX

Although as scleroderma patients we are relatively few in number, 2.5 million worldwide, the small sample of patients included within my global patients profile campaign show that, there are many unmet clinical needs, which patients have in common.

Namely: 

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

 
Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.

An investment in medical research will most certainly improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.

Last week, I celebrated having made another birthday. Here I am, being spoilt by my lovely, childhood friend, Libby, and for whose continued friendship, love and support, I am eternally grateful.



The following day, aged 45, I became a Page 3 girl (not a childhood dream, as such). I was delighted that my local paper featured my scleroderma story, along with my Patient Research Ambassador role. video.  



Living the dream, scleroderma style.         
          
Follow: 

Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld


Please DONATE to help fund medical research at TheScleroderma Unit, The Royal Free Hospital, London.  

100% of your monies will be used for medical research purposes only. No wages. Thank You. 

An edited version of this article was published in my column with Scleroderma News. 
June 2018. 

 
 
 
 
To read my articles: 
 
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', 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.
  
 
Global Patient Profiles Campaign Index, Click here  
 
Global Patient Profiles Campaign Video, 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 Scleroderma Awareness Month 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    
   

No comments:

Post a Comment