Wednesday, 25 April 2018

Scleroderma Family Day - Saturday 19th May 2018. The Atrium, Royal Free Hospital, London. Chair: Professor Chris Denton. Raynaud's, Autoimmune Rare Disease

 
Scleroderma Family Day - Saturday 19th May 2018
The Atrium, Royal Free Hospital, Pond Street, London NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME


09:30 - 10:00           Registration and Coffee

10:00 - 10:20           Welcome      
                                Dame Carol Black
Profs Chris Denton & David Abraham

10:20 - 10:45           Getting To The Heart Of Scleroderma
Dr Dan Knight

10:45 - 11:10           The Importance Of Classification In Scleroderma
Dr Kristina Clark

11:10 - 11:35           Emerging Biological Therapies For Scleroderma
Dr Voon Ong

11:35 - 12:00           Update On Fat Stem Cells To Treat Scleroderma
Prof Peter Butler


12:00 - 14:00           Lunch Break – see below

14.00 – 14.15          Presentation: Plaque, Medical Research Freezer.
In Memory of Kevin East, Annual Golf Day

14:15 - 14:45           Psychological Aspects Of Chronic Immunological Disease
Dr Mari Campbell, Clinical Psychologist, RFH

14:45 - 15:30           Systemic Sclerosis In Children – similarities and differences.
International Speaker, Dr Ivan Foeldvari

15:30                        Raffle


Lunchtime Stalls/Demonstrations:

Clinical Trials: Rachel Ochiel and team

Drug information/monitoring Jay Pang

Massage Mr Keith Hunt, Complementary Therapies

Pulmonary Hypertension Education/nursing Sally Reddecliffe/Adele Dawson

Rheumatology Laboratory Research Laboratory Staff

Scleroderma Education/Nursing Louise Parker/Joseph Cainap

Thermography Dr Kevin Howell

Sjogren’s Syndrome

British Sjögren's Syndrome Assoc


This year is very  special to me, as, I am celebrating my 20th year anniversary of being a patient at the Unit. 
 
If I am truly honest, I really did not think that I would still be around in 2018, having been given a 15month prognosis  in 1997, by my diagnosing doctor. 
In December 1998, I became a patient at the Scleroderma Unit.

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. 

Sept 2017
 
I am now, no longer able to continue in my 60 hour week role as a barrister, as managing my symptoms is a full time job!  
 
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. 
 
However, I know that I am a lucky scleroderma survivor, as I have minimal internal organ damage.  

In December 2016, I was delighted to hear Prof Chris Denton confirm to me that,  
Hence my enormous appreciation to Prof Chris Denton and the team at the Unit, reflected by my awareness and fundraising efforts for the Unit’s research programme.   



Where the entire donation will be used for essential medical research purposes only.
My experience has shown that an early diagnosis is crucial to prevent any possible life threatening damage, along with, multi disciplinary follow up medical care headed by a specialist expert is paramount for best patient care

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   

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, 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  
  
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
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. No wages or admin costs. Thank You.
#HOPE 

 
Last Update: April 2018

No comments:

Post a Comment