Thursday, 28 March 2019

Gift In My Will, Nicola Whitehill. AUTOIMMUNE DISEASE AWARENESS MONTH. Scleroderma, Raynaud's, Autoimmune Rare Disease.


Gift in My Will 
AUTOIMMUNE DISEASE AWARENESS MONTH.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#ADAM #SclerodermaFreeWorld  #RaynaudsFreeWorld  #Research 
#RareDisease  #RareReality #Scleroderma #Raynauds

There is currently no known cure for scleroderma, with little knowledge of its cause. Due to the low incidence in patient numbers, as a rare disease, this presents challenges in the conducting of clinical trials. 

Over the past 20 years, I have taken part in several clinical trials at the Scleroderma Unit under the supervision of Professor Chris Denton. These trials are essential to improving understanding of the disease, as well as, the identification of better medicines.
  
I most certainly experienced an improvement in my symptoms as a result of one of these clinical trials.  Sadly, once the trial had completed, I was no longer able to have the drug as it does not have a licenced use for scleroderma, although it is licensed for other conditions. As a double-blind placebo controlled trial, I was not privy to knowing if I had been given the active drug or the placebo dummy.  However, the improvement in my mobility and MSK pain was nonetheless a very clear positive and welcome outcome.

To know that there is a medicinal ‘something’ which could help to improve my symptoms and which, further to more clinical research, may become available to my diagnosis in the future, fills me with hope: hope that my personal daily reality may be improved one day.  And speaking from my own personal experience, I am certain that newly diagnosed patients will almost certainly benefit from future research developments.  

I am immensely grateful to the Scleroderma Unit, Professor Chris Denton, and the NHS for keeping me alive, decades beyond my initial prognosis at the time of my initial diagnosis, and way beyond what I could ever have expected was possible. However, investment in medical research is still desperately and urgently needed to eliminate this very cruel, debilitating, and life changing disease.

There are exciting developments at the Royal Free including expansion of the Institute of Immunity and Transplantation, which includes the scleroderma clinical service.  The new Pears Building and associated expansion of specialist research opportunities offer a concrete example of what is possible with investment and effort and will ensure that cutting edge laboratory facilities are available in the future.

As mentioned in my last blog, I recently decided to write my Will to make sure my loved ones will be looked after when the inevitable finally happens. I also decided to include the Scleroderma Unit at the Royal Free Hospital in my Will because I want to continue to support their world-class, ground-breaking and much needed medical research into scleroderma, and I know that my legacy gift will make a real difference to the work of the Unit. 

Making my Will using the Royal Free Charity’s free Will writing service could not have been easier. I am extremely impressed with the professionalism of the service which I received from the independent service provider. The whole process was treated with sensitivity and at no time did I feel under any pressure or obligation from the Royal Free Charity. I chose in my own time which firm and who I wanted to assist me with the contents of my Will. The local solicitor was efficient and thorough, making the experience a little more comfortable by not drawing out the process.

I feel a huge sense of relief and peace of mind from knowing that my personal affairs will be honoured, as by my wishes, and that the people and causes I care most about will benefit when I am no longer here.   

You can get more information about this free and independent Will writing service from the Royal Free Charity website at: www.royalfreecharity.org or by emailing the Royal Free Charity Legacies Manager at: rf.legacies@nhs.net.   


 

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 del Galdo
                                 ‘Learning from our patients’

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:  

Planning for the Future, Click here  

 


Rare Disease Day:   

Rare Disease Day 2020: 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  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 Flashback  
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.   
 


Tuesday, 19 March 2019

Planning for the Future, Nicola Whitehill. AUTOIMMUNE DISEASE AWARENESS MONTH. Scleroderma, Raynaud’s. Rare Autoimmune Disease.


 Planning for the Future – Nicola Whitehill.

 Scleroderma, Raynaud’s: Rare Autoimmune Disease.

AUTOIMMUNE DISEASE AWARENESS MONTH.


Over the last two decades, my condition has enabled me to see first-hand how the Scleroderma Unit at the Royal Free Hospital has developed and grown. The work of,  and support, given by this world-renowned centre of excellence for care of patients with scleroderma and connective tissue diseases are simply exceptional. 

The clinical trial unit is very proactive, which provides me with immense hope that the causes of and a cure for scleroderma will be eventually discovered, and hopefully during my lifetime.

Sadly, I have also lost many friends to scleroderma and I know that I am a lucky scleroderma patient. Lucky, as I continue to survive, and lucky, as I have minimal internal organ involvement. I am sure this is due to me having a relatively early diagnosis and treatment plan provided by the Scleroderma Unit.

For over 20 years, I have lived with the daily uncertainty as to whether my disease would ravish my body to the point that medical intervention is futile. It only follows that any sensible person in my position would sort out their personal affairs.  This has made me think about what my wishes would be, in looking after my loved ones when I am no longer here, and to think about my making my Will, so that I can have peace of mind that my wishes will be followed. 

As a patient, I am immensely grateful for the work and support of the Scleroderma Unit over the last 20 years. As a world leader in its field, the Unit’s input into global partnerships and collaboration is crucial for the advancement of medical research. 

So as well as looking after my loved ones, this is why I am leaving a gift in my Will to the Scleroderma unit. I know that the money will be used to support global medical research into treatments, and eventually a cure for Scleroderma.  I have decided that there is no time like the present, and I have taken advantage of the free Will writing service offered by the Royal Free Charity to make my Will, and to ensure my wishes are fulfilled.

Making my Will could not have been easier. I am extremely impressed with the professionalism of the service which I received from the free and independent Will writing scheme. The whole process was treated with sensitivity and at no time did I feel under any pressure or obligation to rush the process. I chose which firm, and who, I wanted to assist me with the contents of my Will. The local solicitor was efficient and thorough, making the experience a little more comfortable by not drawing out the process.

I feel a huge sense of relief and peace of mind from knowing that my personal affairs will be honoured, as by my wishes, and that the people and causes I care most about will benefit when I am no longer here.  

You can get more information about this free Will writing service from the Royal Free Charity website at: www.royalfreecharity.org or by emailing the Royal Free Charity Legacies Manager at: rf.legacies@nhs.net   


  

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 del Galdo
                                 ‘Learning from our patients’

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 

 


Rare Disease Day:   

Rare Disease Day 2020: 

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt  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 Flashback  
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.