Sunday, 1 July 2018

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

Scleroderma Awareness Raising 2018 - Medical Research Investment.

Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  


 
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, Instagram, YouTube, Blogger: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld


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. Thank You. 

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

For optimum patient care, 3 hallmarks preside:







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

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  


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.       



Scleroderma Awareness Raising 2018 - Medical Research Investment.

Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  










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