Monday, 29 October 2018

The Invisible Disability: Scleroderma, Raynaud's. Autoimmune, Rare Disease.

Scleroderma, Raynaud's, The Invisible Disability.
Raynaud's Awareness Month, October 2018.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#RaynaudsFreeWorld #SclerodermaFreeWorld
    
 
14th - 20th October was 'Invisible Disabilities' awareness week

Raynaud's, and scleroderma can be invisible to the untrained human eye. 
 
Hottest day of 2013

The invisible disabilities association says: 
'People often ask what the term invisible disability means. 
To define invisible disability in simple terms is a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker. 
Unfortunately the very fact that these symptoms are invisible, can lead to misunderstandings,  false perceptions and judgments.' 

Invisible disabilities UK,  describe an invisible disability as, 

‘An invisible disability that cannot be seen, may not require a wheelchair, crutches or a blue badge.  
 
Mental Health issues such as depression, stress, anxiety and bipolar can affect individuals and their families. 

The general public can be totally unaware that the individual is suffering and just assume and label as ‘miserable’, ‘attention seeking’, ‘pessimistic’ and given a wide berth, when what they may just need is a bit of understanding and support.  
Physical disabilities which do not require the use of wheelchairs or crutches include lupus, ME, chronic fatigue syndrome and fibromyalgia. 

These are not usually life threatening illnesses but can affect the quality of life such as pain 24/7, limited mobility, being unable to enjoy a good day out or extreme fatigue.’  
 
Although not directly referred to in the description above, the diagnosis of scleroderma along with secondary Raynaud’s can most certainly be classified as an 'Invisible Disability'. 
 
 
 
My 'tin man' body, along with chronic fatigue and mobility challenges, remain constant sources of frustration, making a full time job, with managing my symptoms.
  
I remind myself daily that, I am a 'very lucky patient', for, I have now reached my 21st anniversary since my initial diagnosis. I was told at that time, I had a 15month prognosis, due to the aggressive attack, which the diffuse form of the disease, was having on my body. 
 
I am eternally grateful to Prof Chris Denton and the NHS for keeping me alive.  
 
As well as my other dream team members. 
 
Dr Hannah Sykes, Consultant Rheumatologist, Southport Hospital,and I, Aug 2017,

Andrea, Pharmacist Southport Hospital, and I, Aug 2017

Dr Howell, Raynaud's world trailblazer, and I, Sept 2017
 
However, sadly, during the course of the last few decades, I can not remember the last time that I have had a 'pain free' day. On Christmas Day 2017, I developed shingles. This lingering pain has totally zapped 'the wind from my sails', throughout this year.   

I am reluctant to take any of the recommended narcotic therapies since they cause me to vomit and black out. 'Ah great - another day to spend in bed', is not my favourite mantra. However to look at me, people kindly tell me, ‘But, you look so well'. 
 
This 'invisible aspect' also impacts upon personal independence and interactions with the general public. 
 
One particular personal experience, happened a few years ago. In 2015 I had the pleasure of being invited to present at the annual conference of the British Society for Rheumatology. The location for that year was Manchester - only 40miles away from Southport, with a direct train railway line.     
 
During my travel adventure via public transport, my 'invisible disability' caused me humiliation, by way of 'looking ok'. Maybe I should wear a sign around my neck, Paddington, Sandwich-board style, or maybe a teal ribbon tattoo?
As patients living with a degenerative Rare Disease, education and awareness of such, come along as an optional duty, sadly.  


This Scleroderma Olympian is in training to maximise the hibernation season of winter. Planning a busy 2019, making scleroderma, Raynaud's and the urgent need for medical research investment, visible globally. 
 
 
 
October is Raynaud's Awareness Month and my 50 shades of blue 'party trick' time of year. 
 
During the course of my global patient profiles campaign for Scleroderma Awareness Month 2017 and 2018, every patient detailed how Raynaud’s and digital ulcers were a continual problem to them. INDEX   
Other unmet clinical needs, which patients have in common include: 
 
I am honored to be a patient research ambassador with the National Institute for Health Research. video.  I have recently been added to their 'Hall of Fame' article 
Overall, for optimum patient care, 3 hallmarks preside:
medicaldream team
(expert specialist as the clinical lead).  
 
 



In the meantime, I continue to remind myself that 'My Job Today is to Simply Get Better', with hope, and my canine diva dream team, as my constant companions. 
Living the dream, scleroderma style.  
 
 
Raynaud's Awareness Twibbon for social media.  
Follow:  
 
 
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld  
Please DONATE to help fund medical research at The Raynaud's Unit, The Royal Free Hospital, London.   

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. Thank You. 
October 2018. 

#HOPE  


  

An edited version of this article, Click here, was published in my Column with Scleroderma News. Oct 2018. 
 
 
Raynaud’s Unit, Royal Free Hospital, UK. Facebook Page    Twitter: @RaynaudsRf


If you would like to add the Raynaud's twibbon to your Facebook Profile Picture - please Click here   
 

DONATE, 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   

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  

October 2018.  

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