Monday, 19 November 2018

The Scleroderma Tooth Fairy. Scleroderma, Raynaud's, Autoimmune Rare Disease. Nicola Whitehill.

The Scleroderma Tooth Fairy. 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  



Over here in the northern hemisphere the summer holidays have finished. As scleroderma patients, we know all too well, that we do not have a holiday from this diagnosis. 

More often than not, the management of the multi complex symptoms makes for a full time job

I have previously, likened my experience to being an Olympic athlete

However, this year, I feel that my experience has been more like a circus performer, by way of juggling the many demands which my disease brings.

Although the warmer temperature during the summer months, 'The Magic of Summer', is most welcome, a different set of symptoms present, with pain, fatigue and 'tin man' being a constant.   






The seasonal change from summer to autumn always causes me to have a heavy heart, even though I try to not let this seasonal reality sadden me. 

I know that I will have to prepare for battening down my hatches, and a return to my eskimo-style outfits.

This year, I have been very fragile, having starting the year with shingles. 

At the start of spring 2018, I wrote about the Pandora's Box and my skin cancer experience.   

I also wrote about my ongoing dental issues due to my diagnosis, 'If we only had more research'.

In this article I will be focussing on the dental and oral implications which this diagnosis can bring, and in particular, my recent dental visits.   

Tightening of the skin on the face, combined with shrinkage to the soft tissue around the mouth and lips, causes thinning to the lips, with deep lines around the mouth.  

This change in facial shape and appearance can cause multiple complications. Including, tooth loss due to the recession of the gums and tooth root reabsorption.

A dry mouth symptom can lead to mouth infections and tooth abscess. 

Mouth opening can be very difficult, making a dentist appointment timely and requiring a patient, understanding, scleroderma informed dentist.  

I am extremely grateful to my dentist, Dr Andrew Booth, and dental hygienist, Louise Doran  for their continued patience and expertise.  

I see Louise every three months, combined with appointments with Andrew, every six months. However, this schedule is often interrupted by way of an emergency appointment due to a flare caused by an infection. 
 

 
 

Day 28 Scleroderma Awareness Month 2016. 

Day 18 Scleroderma Awareness Month 2016.  
 



I have difficulty holding a tooth brush due to the physical limitation in my hands and fingers.
 
Over the years, I have developed gum recession. 

This is excruciatingly painful, causing dental involvement requiring tooth extractions and increased susceptibility to infection, aided by a continual dry mouth. 

I am devastated to have had 3 tooth extractions due to scleroderma. 

However, on the bigger picture scale, I know that this is a small irrelevance, compared to some of the organ devastation which other patients experience. 
 



Throughout this year, my gum recession has deteriorated. Last week, during my appointment with Louise, I nearly passed out. I had pain shooting across my face, along to my ear, caused by the exposure of my teeth roots, due to gum recession. 
 

 


After a few days recovery, Andrew, very kindly applied a sealant over the exposed part of the teeth. So far, this has proved successful and I am elated to be ‘face ache free’, caused by gum recession!

I am extremely careful with the foods which I eat, choosing softer, easier to chew foods, as my best option. The scleroderma tooth fairy is not having my two front teeth, or any more of my teeth!!   

This very important symptom of scleroderma, dental / mouth involvement, is most definitely a current unmet clinical need.  


 
 
 
Several of the patients included within my Scleroderma Awareness Month 2017 and 2018 campaigns, reported dental / gum symptoms, as one of their many current health challenges. INDEX.   



Other unmet clinical needs, which patients have in common include:  



 

CALCINOSIS, Click here  

 

GUM RECESSION, TOOTH EXTRACTS, Click here  

 

SOFT TISSUE, ULCERS, Click here   

 

TELANGIECTASIA, Click here  

 

SCLERODACTYL HANDS, Click here    
 

 

INVISIBLE DISABILITY, Click here  
 

 

RAYNAUD'S, Click here  
 

 

GASTROINTESTINAL, Click here
 

Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life. 
 
An investment in medical research will most certainly improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.
 
I am honored to be a patient research ambassador with the National Institute for Health Research. video



For optimum patient care, 3 hallmarks preside:




supported by a medicaldream team’ 
(expert specialist as the clinical lead).  


 

Where, investment in medical research is crucial, to improve the day to day reality, as well as, the long term outlook for the entire global scleroderma community.


In the meantime, I continue to remind myself that 'My Job Today is to Simply Get Better', with the scleroderma tooth fairy away, on holiday. 
  
Follow: 

c


Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter, Instagram, Blogger, You Tube: @SclerodermaRF  @RaynaudsRf  

#SclerodermaFreeWorld           #RaynaudsFreeWorld 




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 staff wages or admin. Thank You.  


 



Coming Up: OCTOBER is RAYNAUD'S AWARENESS MONTH    



 



 



Living the dream, scleroderma style.  
 




An edited version of this article was published here, in my Column with Scleroderma News. 
September 2018.  





  

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. 


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    


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.       


The Scleroderma Tooth Fairy. 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  










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