Tuesday, 14 June 2016

DAY 14: Fatigue, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease


 DAY 14: FATIGUE
Scleroderma Awareness Month 2016
Raynaud’s, Autoimmune Rare Disease


Fatigue is a well known, chronic, debilitating and severe symptom to the autoimmune disease patient, and especially so, with scleroderma.

I wrote about fatigue here  
 

Managing this symptom can be extremely challenging. 

Living with constant exhaustion and lethargy, severely affects the day to day quality of life of the patient, as well as, affecting those in the patient’s family / friends circle.

Last year, Scleroderma News reported on a survey carried out by The American Autoimmune Related Diseases Organisation Association (AARDA), which revealed that:

‘Fatigue has a significant impact on Autoimmune Disease patients’ mental and emotional well-being.

They say it has resulted in increased emotional distress (88%), a sense of isolation (76%), anxiety (72%) and depression (69%). Nearly 87% reported that they discussed fatigue with their doctor, however 59% said they had not been prescribed or recommended any treatment by their provider.

A total of 70% of the respondents said they believed they were judged negatively by others because of their fatigue.’

To read the full article, Click here    

To find out more about the AARDA, Click here


In relation to the survey results, Virginia T. Ladd, President and Executive Director of the AARDA, said in the 2015 press release,

“The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a ‘fuzzy’ symptom, it’s real.

Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It’s time we bring more research funding to this issue to advance understanding and effective treatments for fatigue.”

Sadly, 14months later, this statement still remains relevant, with fatigue being a critical unmet need of the scleroderma patient and the autoimmune patient as a whole.





An edited version of this article was published here, in my Column with Scleroderma News. 
June 2016. 

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      

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, 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       


Raynaud's, Click here    


World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, 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  

More unmet clinical needs  

Rare Disease Day 2016



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

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. Thank You. 
#HOPE 


 

Last Update: April 2018




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