Wednesday, 12 April 2017

Expert Specialist Centers - Scleroderma, Raynaud's, Autoimmune Rare Disease Patients; Nicola Whitehill

Expert Specialist Centers
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  


 

 


Attendance at an expert specialist center is an essential requirement for the best practice of care and treatment for the scleroderma Raynaud’s patient, and for the rare disease patient, in general. 
 
The experience, knowledge and understanding of the specialist medical expert is not only of comfort to the patient, but essential, for an early diagnosis and optimum patient care and implementation of a best care pathway.   


An early diagnosis, is crucial to the scleroderma patient, in the hope that no life threatening irreversible damage presents, and that treatment options still remain a viable option.

I focussed on the relevant diagnostic tests for scleroderma in Day 5 of my Scleroderma Awareness Month 2016 Campaign
 



Day 6  focussed on the current ACR / EULAR scleroderma diagnosis guidelines. 




Expert specialist centers offer a number of advantages to improve the rare disease patient experience, ranging from best patient care, to the production of patient registries for research purposes, to develop improved treatments and understanding of the cause.

Data collection can show commonalities seen in the patient population, providing an understanding as to disease progression, and a basis for research. 

These registries, must, out of necessity to the rare disease patient, be a part of a global research network.

Exchange of best practice globally, is paramount to the rare disease and scleroderma patient, where there is currently no cure, and where there is a large vacuum and medical need, for an improvement in treatments and disease modifying agents. 

Time is a luxury in the life of a rare disease, and particularly so, in the scleroderma, patient.

The Journal of Scleroderma and Related Disorders (JSRD) was launched at the 4th Systemic Sclerosis World Congress in Lisbon, 2016, hosted by the World Scleroderma Foundation

The 5th Systemic Sclerosis World Congress is to take place in Bordeaux, France, February 15-17 2018.   

 

The Journal of Scleroderma and Related Disorders is most welcome to the global scientific scleroderma community, as well as, the scleroderma global patient community, as, its contents demonstrate the global sharing and networking of scleroderma research. 

Read more: Vol 1 Number 1 and Vol 1 Number 2   


To read my article ‘Why global collaboration is so important’, Click here  


Expert specialist centers also serve as a hub for patients to meet with others who are going through the same, similar experience, even though, no two scleroderma patients present with the exact same set of symptoms.   

To read more about World Scleroderma Day 29th June, Click here   


 



The expert specialist center provides not only the best patient care, but also, an invaluable opportunity to share coping and management techniques, alleviating a little of the isolation experienced by the rare disease, scleroderma patient.

To view my article ‘Living the dream, being your own scleroderma Raynaud’s patient advocate', Click here


To view ‘Systemic Sclerosis – A Patient’s Perspective’, the presentation which I gave at the Bristish Society for Rheumatology BSR annual conference, in 2015, Click here






To view the UK Scleroderma Treatment and Management Guidelines, Click here  


The European Rare Diseases Organisation (EURORDIS) provides the following helpful criteria for the designation and evaluation of expert centers:    


‘Each country to establish a procedure to define and approve designation criteria and a transparent designation process:

·       Capacity to manage rare disease patients and provide expert advice; adhere to good practice guidelines for diagnosis and care 
 
·     Patient access to a multidisciplinary team of experts (integrating medical, paramedical, psychological, and social needs)

·       Assure quality of care, participation in internal and external quality schemes, propose quality of care indicators

·   Proven expertise documented by annual volume of referrals, second opinions, publications, grants, teaching and training activities
    
·       Participation in research activities, data collection, clinical trials if applicable

·     Organisation of collaborations to assure the continuity of care between childhood, adolescence and adulthood, if relevant

·       Organisation of collaborations to assure the continuity of care between all stages of the disease’

An empowered, educated scleroderma patient, certainly makes for an easier scleroderma experience. 

An expert specialist center is at the nucleus of this.   


I focussed on the Scleroderma patient Healthcare DreamTeam on Day 30 of Scleroderma Awareness Month 2016 Campaign.   




I am eternally grateful to be a patient at the center of expertise, the scleroderma unit at the Royal Free Hospital in London, headed up by Professor Denton. 

This world class center of expertise, without a doubt, is a global leading light in the scleroderma global research field. 

I know that my success of still being around, to have now transformed into being a scleroderma parrot, is attributed to the world class healthcare and treatment which this expert center provides, as well as the superhuman medical expertise of Professor Denton.

Over the last two decades, I have taken part in several clinical trials conducted by the Scleroderma Unit, led by Prof Denton. To read more about this, Click here    


Living the dream, scleroderma style, hoping for a cure....



'My Skin is Cured From Scleroderma' 19 years post diagnosis, Nicola Whitehill, 30.11.16




An edited version of this article was published here, in my Column with Scleroderma News. 
July 2016. 



  

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.  


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

  

  
Last Update: Feb 2020.       



Expert Specialist Centers
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  












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