Saturday, 29 September 2018

Medical Research. Get involved: Take Part, Raise Awareness. Raynaud's, Scleroderma, Autoimmune Rare Disease.

 Medical Research - Get involved: Take Part, Raise Awareness  

Scleroderma, Raynaud's, Autoimmune Rare Disease.

At the start of this year, I was delighted to have been invited to join the National Institute for Health Research (NIHR) as a Patient Research Ambassador (PRA) for the dermatology and musculo-skeletal departments, The Royal Free Hospital, London.

The NIHR is,
‘The most integrated clinical research system in the world. Funding high quality research; training and supporting researchers; providing world class facilities.’   

This role is a huge honour for me, and one which I am VERY passionate about. VIDEO.

As well as, I am very passionate about my NHS England CRG role, and European Medicines Agency role.

As, all of these roles are influencers in the medical research landscape. Ranging from the design of a clinical trial (my EMA role), to best practice and guidelines (NHS England role). 


Further to my recent, local ‘Page 3 Girl’ debut in my local newspaper, (published last month, during June, Scleroderma Awareness Month), I am truly honoured and humbled to have been quoted on the front page, as well as, featured within, the recently published NIHR annual report.  

NIHR Annual Report: Front Page

 
NIHR Annual Report, Case Study






Thus, putting the spotlight on Raynaud’s and scleroderma, and the huge significance of medical research within the rare disease community.

I was overjoyed that the NIHR annual report was shared by various global media. 

MedTech


Including Med-Tech and The European Pharmaceutical Manufacturer quoting me, and naming Raynaud’s and scleroderma, in their headline story.  

  


As rare disease patients we know all too well that, any and every day, is an opportunity to engage conversation about our reality.  


Over here in the UK, we are truly blessed to have a world class healthcare service by way of the NHS, paralleled with the NIHR.

Medical research is the crux to uncovering the cause and cure to not just scleroderma and Raynaud’s, but to any disease.

This is why, I have made medical research the underlying theme for all of the articles, which I have written for my column with Scleroderma News, and my personal blog: blog.raynaudsscleroderma.co.uk, during the course of the last few years.

Also, medical research has been the theme for Rare Disease Day 2018, and 2017.

During my 21 years of living with diffuse scleroderma and Raynaud’s, I have taken part in several clinical trials

All of these trials were led by Prof Chris Denton, at the Scleroderma Unit, at The Royal Free Hospital.

It was very important for me to know that the trials were being led by such an expert team. 

I am not the most willing of participants of taking any drug, licensed or non licensed, at the best of times.

However, I saw my participation as an opportunity to investigate if there was a mystery compound which could improve my day to day reality with my symptoms. And, if I could not benefit directly, that, patients who may be diagnosed in the future, may benefit from the therapy, if the results proved favourable for such.    

Sadly, one of the difficulties of researching a rare disease is the lack of patient numbers available, who are eligible to take part.

This is why global collaboration, as well as, global data bases and expert specialist centers, are paramount to make progress in the medical research arena for the rare disease community.   

 

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


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.

The conclusions of which, showed that for optimum patient care, 3 hallmarks preside:
Where, investment in medical research is crucial, to improve the day to day reality, as well as, the long term outlook for the entire global scleroderma community.



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: 
 
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.
In 2015, I was honoured to become a patient voice on the NHS England advisory group for Specialised Rheumatology.
In this role, I am totally blown away by the commitment and dedication shown by the medics involved, to improving the service which the NHS has to offer in this medical speciality.
I feel particularly honoured to have been a patient voice, on the NHS England policy for the management of digital ulcers, published July 2015. 
Fellow patient Miss Universe, me, Christine and Lauren from NIHR team
I am also very honoured to have become a Patient Research Ambassador for the National Institute of Health Research, the research side to the NHS. Video.
Due to the systemic involvement of my diffuse scleroderma, I am known to many of the different medical specialities included within the NHS umbrella.
For optimum best practice and care, a medical ‘dream team’ is paramount, with an expert specialist as the clinical lead. 


I am truly grateful for my medical ‘dream team’, made possible and available to me, by the world class leading healthcare system, the NHS.  
 
I very much recommend for any patient to take part in a clinical trial run by a center of excellence.


Living the dream, scleroderma style.         
          

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 
 

   
#SclerodermaFreeWorld  #RaynaudsFreeWorld 

An edited version of this article, Click here, was published in my Column with Scleroderma News. August 2018. 
 
 
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     

OCTOBER: 
 

Raynaud's, Click here    

This year, 2018, 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   

Global Patient Profiles Campaign 2018 Video, Click here   

2018 Scleroderma Awareness Raising and Medical Research, 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 Scleroderma Awareness 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  
 
PLEASE DONATE here   

#SclerodermaFreeWorld #RaynaudsFreeWorld 

Sept 2018.
  

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