Tuesday, 14 June 2016

DAY 14: Fatigue, Scleroderma Awareness Month 2016

DAY 14: Fatigue, Scleroderma Awareness Month 2016 
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."


This article was originally published here  in my Column with Scleroderma News.
To read my articles:
The importance of an early diagnosis click here 
the role of medical research click here
the importance of expert specialist centres click here
diet and nutrition click here
taking part in research trials click here
the UK guidelines for management and treatment of Scleroderma click here
my skin is cured from scleroderma click here 
BSR and BHPR guideline for the prescription and monitoring of non-biologic disease-modifying anti-rheumatic drugs, Raynaud's, Scleroderma, Rare Disease click here  

EULAR guidelines for treatment of systemic sclerosis scleroderma, click here  


Please DONATE to help fund medical research at the Scleroderma Unit at The Royal Free hospital where 100% of your donation will be used to fund vital medical research. Thank You.
 
May 2017 total
Living the dream, scleroderma style, hoping for a cure
#SclerodermaFreeWorld #RaynaudsFreeWorld
29th June World Scleroderma Day. Read more here   
Scleroderma Awareness flashback 2016. Read more here  
Scleroderma Awareness 2016 Campaign Index Click here  
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates 
To view the Facebook page Scleroderma Awareness Month 2016 campaign images Click  here
To view Facebook page Photo Album ‘Wellbeing Side to living with Raynaud’s and Scleroderma’ Click  here 
Please use the icons below to share this article #SclerodermaAwareness


 

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