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  
 
  
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. 

To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here   

Becoming a Patient Research Ambassador for the NIHR, Click here  
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here



Key Event Dates 2018, Click here     

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, Click here    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception 

2017 Rare Disease Day Flashback  

More unmet clinical needs  

Rare Disease Day 2016



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. 

VIDEO



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: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


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.
I am truly humbled and inspired by their work ethic. 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 diagnosing doctor, that I was looking at a 15month prognosis. 

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.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

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. Thank You. 
#HOPE 


 

Last Update: April 2018







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