Friday, 2 June 2017

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease

Why Research and Patient Profiles?
Scleroderma Awareness Month 2017. 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld 

 blog.raynaudsscleroderma.co.uk  



1st June, saw the start of Scleroderma Awareness Month, with the 29th, being World Scleroderma Day. 

Further to this year’s Rare Disease Day 2017 theme being ‘Research – With Research Possibilities are Limitless’, I have made ‘Research’ the theme of my Scleroderma Awareness Month 2017 Campaign, along with patient profiles.   

To read my articles for Rare Disease Day 2017: 

'Medical Research and its importance', Click here 

'Clinical Unmet Needs for the Raynaud's Scleroderma patient', Click here

In this article, I intend on discussing the importance of research, combined with a global collaborative approach. 

As well as, how raising scleroderma awareness during June, can maximise the potential of the cause and cure of this rare disease being discovered, in our lifetime. 

I discussed more about how research provides immense hope to the scleroderma Raynaud’s rare disease patient in my last article about the importance of scleroderma awareness month, Click here  


Why patient profiles?  

This autumn, 2017, marks my 20th anniversary of living with the disease. 

Upon my initial diagnosis, in 1997, aged 24, I was given a prognosis of 15 months.

At that time, I was working as a medical representative for Bristol Myers Squibb, as well as, studying on a part time distance learning basis to achieve my dream to become a barrister. 

I consider myself to be an extremely ‘lucky’ scleroderma Raynaud’s patient, in that, I have minimal internal organ damage. 

I contribute this to the excellent care which I received from having attended the Scleroderma Unit at the Royal Free Hospital, London, December 1998, and, I continue to attend. 

Within 30 seconds of my appointment with Dame Professor Carol Black, I knew that she would use all of her medical expertise to help me get better and help me realise my dream. 

Several years of intense chemotherapy infusions combined with the immuno-suppressant, mycophenolate, eventually stabalised what was a very aggressive diffuse form of the disease. 

I was also on the stem cell transplant waiting list.  

By now, my hero, Professor Chris Denton had become my lead Doctor, and to whom I am eternally grateful to, and will forever remain so. His dedication and commitment to his patients and the scleroderma Raynaud’s global community is superhuman.   

Prof Denton helped me realise my dream. 1st March 2004 I qualified as a self employed practising barrister in my own right. 

Sadly, if you have followed my blog, you will know that my ‘tin man’ body due to the damage from scleroderma, combined with my extreme Raynaud’s sensitivity, makes being ‘under house arrest’, my optimum symptom management location, and the internet my lifeline. 

Read more, here  

I therefore feel ‘lucky’ that I had, in effect, an early diagnosis whereby treatments still remained an option to me. 

Even though managing my symptoms, combined with the damage to my body caused by the scleroderma, makes for a full time job. 

Any spare energy or time which I have, is dedicated to the scleroderma Raynaud’s cause. 

To read my article ‘Ah great, another day to spend in bed, said no scleroderma Raynaud’s rare disease patient’, Click here 

I have a new dream now – a Scleroderma Free World, and a Raynaud’s Free World.   

I very much hope that this dream becomes a reality in my lifetime. 

I believe that it will, upon investment and global collaboration in research, not just for scleroderma but for the autoimmune diseases as a whole.  

Further to my personal experience, and my new dream, I am passionate that a scleroderma Raynaud’s diagnosis is not subject to a postcode / ZIP / Country lottery, as to best practice and care for the patient.  

Along with, expert specialist centres being essential, and medical research being a priority. 

The Scleroderma Unit at the Royal Free Hospital is the UK national scleroderma clinical trials centre.   

Due to scleroderma being a rare disease, and therefore having low patient numbers, clinical trial recruitment is a challenge. 

It is difficult to obtain clinically sound, scientific statistically significant data, with only a small population eligible to take part. 

This is why global collaboration is crucial for the sharing of best practice for the scleroderma Raynaud’s patient.  

Taking part in a clinical trial is an opportunity to have access to the most advanced potential therapies. Read more about my clinical trial experience, here  

During the lead up to June, I contacted several patients from around the globe, asking for them to complete a short questionnaire. 

I designed the questionnaire to highlight the global diagnostic approach, as well as, treatment for the global scleroderma Raynaud’s patient, and how their experience could be improved.  

I am truly humbled to all those who took part and thank each and every patient who shared their reality, to help put the spotlight on this life changing, if not life threatening, rare disease. 

Follow the campaign at Scleroderma News, as well as, my Raynauds Scleroderma Awareness Global Patients Facebook Page 

Living the dream, scleroderma style, hoping for a cure

#SclerodermaFreeWorld #RaynaudsFreeWorld  

Please donate to my Just Giving page for the Scleroderma Unit at the Royal Free Hospital where 100% of your donation will be used for medical research only. Thank You. 
 

 




An edited version of this article was published here, in my Column with Scleroderma News. 
June 2017
 


  

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    


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.  


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 

  

  
Last Update: Feb 2020.       



Why Research and Patient Profiles?
Scleroderma Awareness Month 2017. 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld 

 blog.raynaudsscleroderma.co.uk  









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