Tuesday, 21 June 2016

DAY 21: ‪‎Upper Gastro-Intestinal Tract, Scleroderma Awareness Month‬ 2016, Raynaud's, Autoimmune, Rare Disease

DAY 21: UPPER Gastro-Intestinal Tract  

Scleroderma Awareness Month 2016 
Raynaud's, Autoimmune Rare Disease 


DAY 21  Scleroderma Awareness Month: UPPER Gastro-Intestinal Tract 


Scleroderma can affect the entire gastro-intestinal system starting from the mouth all the way down to the anus. 

See Day 11 Scleroderma Awareness Month for a general discussion of these symptoms.

Dry mouth, along with difficulty in swallowing and mouth opening can be a challenge. I focussed on the mouth and dental issues, Day 18 Scleroderma Awareness Month, highlighting the difficulty with chewing and gum recession and all that this entails. 

Heartburn and acid at the back of the throat is a frequent, most unpleasant symptom, with no adequate treatment or cure available. 

The proton pump inhibitor (PPI) class of drugs provide some relief, however, more recent studies have shown that long term use brings along further problems. 

Scleroderma can affect the gut lining and gut muscle compromising food absorption and digestion. 

This is often accompanied with a bloating, ‘full’ feeling after a couple of mouthfuls of food. 

This can eventually lead to malnutrition due to the body not having access to the relevant nutrition. 

A watermelon stomach can be seen in some patients due to a change in the blood vessels, as can be seen in the image. 

In the most severe of cases, a feeding tube is necessary. 

Medications can also exacerbate GI symptoms. 

Over the years, I have learnt to identify my trigger acid inducing foods, and make sure that I avoid them, in the hope to prevent any acid excess. 

I have daily fruit and vegetable juices, which have most definitely, improved my symptoms and improved my energy. 

To read more about this, 2017 diet update and 2015 diet update

My fellow scleroderma patient, American friend, Kelli started the Facebook page ‘Healing Loving Scleroderma with Real Food’ which I also contribute on.

Since changing her diet and including daily fresh juices, Kelli has experienced similar results to me, with improving her symptoms and their management, which she shares, on the Facebook page. 
 
Slow mobility of food and digestion can lead the micro flora of bacteria in the gut to become overgrown, adding to the GI symptom list. 

Excessive antibiotic use can lead to internal candida and the complications which this then brings. 

As I explained in the post for Day 11 Scleroderma Awareness Month, I have learnt that prevention is better than cure, when it comes to GI symptoms and best management. 

I avoid my trigger foods, and ensure daily juices for optimum nutrition, and hope for the best! 

To see the UK Scleroderma Study Group guidelines for best practice in GI management, Click here  

Interestingly, a recent paper: 
‘Systemic sclerosis is associated with specific alterations in gastrointestinal microbiota in two independent cohorts’ 
has been published in the BMJ Open Gastroenterology Journal, online 10th April 2017. 

The conclusions of which, suggested that gastro-intestinal bacteria flora 
‘may be a pathological feature of the SSc disease state.’
To read the full article, Click here  

 


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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