Tuesday, 12 June 2018

Scleroderma Awareness Month 2018. Unmet Clinical Needs. Raynaud’s, Autoimmune, Rare Disease

Scleroderma Awareness Month 2018 – Unmet Clinical Needs.
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  


 
We are nearly a week into our annual awareness month, 'spotlight opportunity' for raising awareness about our rare disease and our day to day reality.  

Further to this year, and last year's Rare Disease Day theme being 'Research', combined with my personal experience and view about the importance of research, my Scleroderma Awareness Month 2018 campaign, is also based on research.  




Due to the overwhelming success and interest shown towards my global Patient Profiles Campaign started for Scleroderma Awareness Month 2017, I have updated each patient's profile with their personal experience of medical research, and what they think about medical research.  

I owe huge gratitude and hold immense admiration, to ALL of the patients who kindly took part in the campaign and who, have kindly provided an update as to their general health and symptoms, also.  
  



As patients, we know all too well, how this diagnosis is more often than not, a full time job with symptom management. 



I have a strict diet and daily routine, in an attempt to minimise the severity of my symptoms, but even then, the Pandora’s Box connected to my scleroderma or my Raynaud’s symptoms will present with further unwelcome surprises.

Whilst updating each patient’s annual review, it was, sadly, no surprise for me to see that no patient has reported a marked improvement with their symptoms.

All patients continue to report their same set of symptoms, if not an increase in severity, along with several other additional symptoms, over the course of the last 12 months.

However, I was surprised, and sadly, not in a good way, the number of patients who have not taken part in any clinical trials, but, are willing to do so. 

Here, I am earlier this year, in my Patient Research Ambassador role with the National Institute for Health Research, talking about why I think medical research is so important.  



Although scleroderma patients are few in number globally, hence the title ‘rare disease’, and no two patients display the exact same set of symptoms, there are similarities which can been seen.

The following clinical unmet needs were prevalent, for the majority of the patients, who kindly took part in the global patients profile campaign: 

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   



By no means is this an exhaustive list of the current clinical unmet needs experienced with a scleroderma and Raynaud’s diagnosis.

This plethora of symptoms illuminates the systemic effect which the disease process has on the body. 

Thus, a multidisciplinary medical expert team is essential, for best patient care and management. 



My Scleroderma Awareness Month 2016 campaign focussed on the systemic effect and treatment options available. An AtoZ 'all you need to know'.   


 

Another sad reality, in my view, which most of the profile patients have reported, is the cocktail of drugs which they take on a daily basis, in an attempt to just suppress their symptoms.  
  
It is however, very encouraging and exciting, to see some improvements in the disease management, care, and understanding process.

For, Swiss patient Alice, has just celebrated her 6 year double lung transplant, and UK patient Sarah, reports an improvement with her symptoms, further to her stem cell transplant. Although, not with the contracture of her fingers, sadly. 

Thanks to Sarah for sharing her image for the ‘Sclerodactyl’ image. And of course, the miraculous Roy and Jacob from the USA!  

In fact, ALL of the patients, show immense inner strength and bravery, and are ALL scleroderma miracles, in my view! 
 



Only a few weeks remain until World Scleroderma Day, 29th June.

Each participant of the global profiles campaign has also included within their 2018 update, what they do ‘In Between Medical Appointments’. 

As well as, several patients have kindly shared their creative ‘show stopper’s on social media, which will be collated into a video for World Scleroderma Day. 

If you would like to be involved – please get in contact!  

World Scleroderma Day 2017, Flashback 

World Scleroderma Day 2016, Origins of the date 


World Scleroderma Day 2015, 29th June. Presentation at the European Parliament. 



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 

This experience still remains one of my few patient highlights of the last 21 years. Even though, the travelling was a harsh reminder as to why I had not been abroad for the previous decade!

In my view, medical research provides immense HOPE for a much needed improvement with our day to day reality. As well as, an improvement in the prognosis for newly diagnosed patients. AND, ultimately the dream – a Scleroderma Free World.   

          
Follow: 

Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter, Blogger, 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 / admin costs. Thank You.   

 





 An edited version of this article was published here, 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  

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    





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  

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 Month 2018 – Unmet Clinical Needs.
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  










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