Monday, 19 November 2018

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


The Scleroderma Tooth Fairy

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.

Overall, for optimum patient care, 3 hallmarks preside:
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. 

Living the dream, scleroderma style.         
          
Follow: 


Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld



Please DONATE to help fund medical research at TheScleroderma 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.  



To read my Raynaud's articles: 
 
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   

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here  
 
To read My ‘Invisible Disability’ experience, Click here  

  


Facebook Page: Raynauds Unit Royal Free Hospital
  
Twitter: @RaynaudsRf 


Living the dream, hoping for a cure ....


To read my articles: 

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    

This year, 2018, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.  

Sept 2017

Prof Chris Denton and I, 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. 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 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. Read more, here     

Global Patient Profiles Campaign 2018 Index, Click here

Global Patient Profiles Campaign 2018 Video, Click here   

2018 Scleroderma Awareness Raising and Medical Research, Click here  

Importance of Medical Research and Awareness Raising, Click here  

NIHR Video: 'My Experience of Clinical Trials', Click here    

Becoming a Patient Research Ambassador for the NIHR, Click here    
  
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here 
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here  
Scleroderma Awareness Month Flashback 2016, Click here  
My 2016 Scleroderma Awareness Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here   
 
March 2018 Autoimmune Disease Awareness Month, 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 

To view my article 'Why Global Collaboration is Important', Click here     

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

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   
Preamble - 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.
 
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, 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  
 
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Although the following unmet clinical needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life. 

 
GUM RECESSION, TOOTH EXTRACTS
 
  
 
   
 
RAYNAUD'S,   
 
 

An investment in medical research will most certainly improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.  
 
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).

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.  

Follow: 

Twitter: @SclerodermaRF  @RaynaudsRf  
 
 
#SclerodermaFreeWorld           #RaynaudsFreeWorld
#IamScience


 
   
#SclerodermaFreeWorld #RaynaudsFreeWorld 

 
Click here for Twibbon  

November 2018.




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