Sunday, 15 October 2017

Invisible Disabilities Awareness Week. Raynaud's Awareness Month, October 2017. Scleroderma, Autoimmune Rare Disease.

Invisible Disabilities Awareness Week.

Raynaud's Awareness Month, October 2017.

Scleroderma, Autoimmune Rare Disease.
 


October 15-21 October is invisible disabilities week

Raynaud's, and scleroderma can be invisible to the untrained human eye.


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 in invisible disability.   


To read more about my initial diagnosis, Click here    

Sadly, I can not remember the last time that I had a pain free day, whilst living with my 20 year diagnosis. 

I am reluctant to take any of the recommended narcotic therapies. 

Since, the lower end of the pain killing spectrum have little effect, where as, the more potent drugs, cause me to vomit and send my head fuzzy.  


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.
 
 
'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’……  



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


Please DONATE to help fund medical research into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free Hospital, UK.

All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.   

Dr Howell and I, Sept 2017



#RaynaudsFreeWorld #RaynaudsAwarenessMonth

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




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



Click here for Twibbon  

October 2017. 
#IDW17  



To read my articles: 

Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, 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   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, Click here     

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, Click here  
   



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click 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. 

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017. 

VIDEO


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: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

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


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

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.
I am truly humbled and inspired by their work ethic. 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.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


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.
#HOPE 


 

Last Update: April 2018 

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