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. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  






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:







supported by a medicaldream team’ 
(expert specialist as the clinical lead).

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.

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:  


  


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 

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, Instagram, YouTube: @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.

  



   
#SclerodermaFreeWorld  #RaynaudsFreeWorld 

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

  



  

Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09.30 – 10.00           Registration and Coffee

10.00 – 10.20           Welcome                                                   Dame Carol Black
                                                                Prof Chris Denton & David Abraham

10.20 – 10.40           What is a Biopsy?                                    Dr Kristina Clark

10.40 – 11.05           Dental aspects of Scleroderma            Prof Stephen Porter

11.05 – 11.25           Gastrointestinal problems –                       Dr Fiza Ahmed
shedding new light on old problems 

11.25 – 11.50           Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15           Scleroderma cohort studies –                  Dr Francesco 
                                 ‘Learning from our patients’                     del Galdo

12.15 – 14.15           LUNCH BREAK – see below  

14.15 – 14.45           25 years of progress –                          Prof Chris Denton
from ‘black box’ to ‘positive trials’

14.45 – 15.15           International speaker –                            Dr Madelon Vonk
                                 Scleroderma Management in Netherlands

15.30                        Raffle


Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials                                                                  Rachel Ochiel and team
National Institute of Health Research                            Christine Menzies
Drug Information / monitoring                                        Pharmacy
Massage                                                                         Keith Hunt MBE
Pulmonary Hypertension Education / nursing            Sally Reddecliffe/Adele Dawson
Rheumatology Laboratory                                          Research Laboratory Staff
Scleroderma Education / Nursing                          Louise Parker/ Joseph Cainap
Thermography                                                                Dr Kevin Howell
SRUK                                                                             Ollie Scott
Sjogren’s syndrome                                                       British Sjogren’s Society 


To Read My Articles:  

Gift in My Will, Click here 

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020:  

  

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here  


 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  here   


 
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here  

  


 
Rare Disease Day 2019: Leaving a Legacy Gift, Click here       



Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here  

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2017 Rare Disease Day Medical Research  


2016 Rare Disease Day Patient Voice   

2016 Rare Disease UK Parliamentary Reception       

  

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.


To read about medical research at the scleroderma unit, Click here   

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 overall. 

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.   


To read my articles:  

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here
 
NIHR Video: 'My Experience of Clinical Trials', 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  

2018 Scleroderma Awareness Raising and Medical Research, Click here    


SCLERODERMA:

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- How to Diagnose, Click here        

'All you need to know', 2016 Awareness Video, Click here    

Global Patient Profiles 2018 Video, Click here    


Unmet Medical Needs, Click here     




Calcinosis Video, Click here    


The scleroderma tooth fairy, Click here     


Skin Cancer and scleroderma, Click here   

 

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019



This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Read more, here.    

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.  

I am truly humbled and inspired by their work ethic and commitment to their patients.  

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 original diagnosing doctor, that I was looking at a 15month prognosis. 
 


  

Chat Magazine May 2019

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     

  

World Scleroderma Day 2018, 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, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

Raynaud's

October:  
Raynaud's, Click here  
 
To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here   

To view the EULAR treatment guidelines, Click here    
To view Thermograph Video, Click here    

To view Thermograph image, Click here    

   
My Raynaud’s reality, Click here     


The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here   

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here   

50 Shades of Blue, Click here



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

Twitter, Instagram, Blogger, YouTube, Facebook Page:

#SclerodermaFreeWorld           #RaynaudsFreeWorld    #Research  



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. 

  

  
Last Update: Feb 2020.       



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



#RaynaudsFreeWorld #SclerodermaFreeWorld  











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