Friday, 13 April 2018

Raynaud’s, Scleroderma and Digital Ulcers. Autoimmune, Rare Disease. Nicola Whitehill.

Raynaud’s, Scleroderma and Digital Ulcers 

Autoimmune Rare Disease



#SclerodermaFreeWorld  #RaynaudsFreeWorld  





Here in the UK, summer is gradually transforming into autumn. The decrease in temperature can be seen by the change in colour to the leaves on the trees, as well as, a change in colour to my fingers and toes. 

Even on a hot summer’s day, I struggle to maintain a healthy normal colour to my hands and feet. The smallest of breezes or a draft, is sufficient to set off my Raynaud’s symptoms. 
 

Hottest day of 2013, I have to wear Ugg boots and gloves

As all patients know, all too well, there is currently no cure for Raynaud’s.  

 
During the course of the last two decades, I have learnt, (the hard way, I hasten to add), that prevention is most certainly the best way for me to manage my Raynaud’s hypersensitivity.  

My nemesis season, being Winter.





Consequently, my reality for optimum symptom management, means me being housebound for most of the year. Intense hibernation and house arrest, are a foregone conclusion from October – April.  

A seasonal change will bring along a different set of symptoms to juggle.  

‘You should get out more’ is certainly not a viable option for me, whilst trying to maintain a constant body temperature, in the hope to prevent a Raynaud’s attack.  

In the event of a Raynaud’s attack, my entire body will go into spasm, as well as, I lose the colour to my hands and feet.  
  


 


 



The time taken to eventually ‘warm up’ again- bringing the colour back to my extremities, will vary from minutes to hours, depending upon the intensity of the attack. 

This will then be followed by complete exhaustion, whilst my body repletes its energy levels, which, further to my scleroderma symptoms, are minuscule at the best of times.  
 

 

Fatigue remains one of my biggest challenges.  
  





DIGITAL ULCERS     

Prior to me taking the medicine, bosentan, I would constantly have ulcers on my fingers, and sometimes, on my toes. 

I can not describe accurately, the excrutiating pain which ulcers bring. Along with, the time consuming process for them to heal. 

In the event that they do not heal, and become infected, amputation of the affected digit / area, is a realistic possibility. Hence my strict house detention rules. 
   
I included Digital Ulcers as one of the many Unmet Clinical Needs of the Scleroderma patient, for my article for Rare Disease Day 2017.     


  

Digital ulcers were also highlighted by EVERY patient, who kindly, took part in my patient profiles campaign for Scleroderma Awareness Month 2017.  
 





In particular:  


Deani UK  

 
 

 


 


 



Jan UK   

 

 

  


 


Alex UK    


 



  


 


Kelli from the USA   


 


 


Thanks to Kelli for this image - used extensively throughout the awareness campaign

As stated earlier, there is currently no cure for Raynaud’s, with treatments altering blood pressure, whilst widening the blood vessel, in an attempt to maintain the circulation and blood supply.   


October is Raynaud’s Awareness Month.
 


 


 

Sadly, I am unable to tolerate any of the recommended ‘treatments’, as my blood pressure is too low and I experience the side effects of dizziness and nose bleeds.  

I am extremely honoured to have been a contributor with the medical team who compiled the NHS England guidelines for the treatment of Digital Ulcers, published June 2015.  

Within my advisory role to the European Medicines Agency (EMA), my suggestion that digital ulcers be included in ALL scientific clinical trial protocol has been endorsed - against much protest from pharmaceutical company representees! 

My argument being, that, for a new compound to be given the licensed indication for treatment of systemic sclerosis, a positive effect on digital ulcers must be seen, along with other biomarkers, and not just, a reduction in skin fibrosis.  



Management of Digital Ulcers – UKSSG

The Editorial contained within Vol. 2 Issue2, May – Aug 2017, of the Journal of Scleroderma and related Disorders, sets out ‘The critical need for accurately defining digital ulcers in scleroderma’ 


The research article ‘Defining skin ulcers in systemic sclerosis: systematic literature review and proposed World Scleroderma (WSF) definition, is contained within the same edition. 

Both the Editorial and the research article set out the difficulties which digital ulcers pose in their identification, management and treatment.   
 
However, the presence of this topic being discussed within the Journal, is very encouraging to the patient. 

Since, in my view, digital ulcers, albeit not life threatening per se, have not been given the medical and pharmaceutical recognition which they deserve, as by their causing complete misery and catastrophe to the Raynaud’s and scleroderma patient's day to day activities. 


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.

#SclerodermaFreeWorld #RaynaudsFreeWorld
#RareDisease #Hope #Belief 

Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates  


   





An edited version of this article was published here, in my Column with Scleroderma News. 
September 2017.    



  

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.  


Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here    
 


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

  

  
Last Update: Feb 2020.       


Raynaud’s, Scleroderma and Digital Ulcers 

Autoimmune Rare Disease. 



#SclerodermaFreeWorld  #RaynaudsFreeWorld  










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