Monday, 19 February 2018

If we only had more RESEARCH Investment for Scleroderma, Raynaud's, Autoimmune Rare Disease

If we only had more Research Investment, 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  




Well today is Valentine’s Day! 

As with all of the internal organs, systemic sclerosis can affect the heart. 

It is therefore, crucial for the heart to be monitored at initial diagnosis, as well as, follow up, continued monitoring.    

In my view, for the best patient care, an early diagnosis  at an expert specialist centre  is paramount for life survival. 
 

 

I detailed more about heart involvement on Day 16 of my Scleroderma Awareness Month Campaign 2016.    

 
In the film ‘The Wizard of Oz’, the tin man sings ‘if only I had a heart’. 

Of course, I must mention my global ‘tin man awareness persona'. 
  

 


 


 


 




This tin man is living the dream, nurturing her heart, being a rare disease patient advocate.  


 


 
Rare Disease UK parliamentary reception 2016 


  


2.3.2016 Rare Disease UK Parliamentary reception


However, the Pandora’s Box  of my symptoms have kept me occupied with my dental involvement recently.  

 
Gum recession can be experienced causing dental involvement requiring tooth extractions and increased susceptibility to infection, aided by a continual dry mouth. 

Shrinkage to the soft tissue around the mouth and lips, causes thinning to the lips and makes mouth opening very difficult. 
    

 




DAY 18  Scleroderma Awareness Month 2016, I detailed more about this.

I am extremely grateful to my dentist Dr Andrew Booth and Louise Doran  for their continued patience and expertise. 

I have dental check ups every 6 months, combined with hygienist appointments every 3 months. I have difficulty holding a tooth brush due to the physical limitation in my hands and fingers. 
 
This very important symptom of scleroderma, dental / mouth involvement, is most definitely a current unmet clinical need
  



I am devastated to have had 3 tooth extractions due to scleroderma. However, on the bigger picture scale, I know that this is a small irrelevance, compared to some of the organ devastation which other patients experience. 
 



Sadly, I am not able to attend the 5th World Systemic Sclerosis Congress which starts in Bordeaux, tomorrow. It has been my personal goal / gold medal, since the 1st  Congress, to attend. 

But, this Scleroderma Olympian  has had to accept that further training is still required, for travel and nights away.  
 
The Congress provides a fantastic forum for anyone who has an interest in scleroderma. The most recent up to date developments, encompassing the entire disease landscape, are showcased.  

Research is the key 
 
#SclerodermaFreeWorld    #RaynaudsFreeWorld 
 

Abstracts from the 4th World Systemic Sclerosis Congress held in Lisbon, highlighted the many different areas which are being explored for research purposes. 
 


    
I am delighted to have recently become a Patient Research Ambassador for the Dermatology and Musculoskeletal departments at the Royal Free Hospital   



2018 Key Dates include The Family Day, Scleroderma Unit on the 19th May. 
  



I will be celebrating my 20th year of being a patient at the Unit – I very much hope that you will join me?!    

 

In the meantime, Rare Disease Day February 28th, is only 2 weeks away.  

 
  
The theme to this years Rare Disease Day is Research.  

  

 
2017 Rare Disease Day Flashback  
  

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.  

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017 Campaign.  

Although, rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide (as by the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same: 

For optimum patient care, 3 hallmarks preside:







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


I will be taking part in a live Twitter feed on the 27th February, highlighting the importance of medical research to the rare disease patient.  


 
Please join me: @SclerodermaRF @cosmicfairy444 
Living the dream, scleroderma style.  

 
Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.   

‘If only we had more research’….  

Wishing you a heart-felt Valentine’s Day, loving life, feeling good.   

#SclerodermaFreeWorld #RaynaudsFreeWorld  




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

  


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.       



If we only had more Research Investment, 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  






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