Sunday, 26 June 2016

DAY 26: Lower Gastro-Intestinal Tract, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease


 DAY 26: Lower Gastro-intestinal Tract  

Scleroderma Awareness Month 2016 
Raynaud's, Autoimmune Rare Disease


DAY 26: Lower Gastro-intestinal Tract 


Today’s image and post focusses on the lower gastro-intestinal tract. 


DAY 11 Scleroderma Awareness Month focussed on the gastro-intestinal tract in general. 


DAY 21 Scleroderma Awareness Month focussed on the upper gastro-intestinal tract.   


The lower gastro-intestinal symptoms which can be experienced by scleroderma patients, can at best be extremely uncomfortable and often cause personal embarrassment. 

Scleroderma can affect the body’s ability to absorb nutrients as well as provide an environment for bacterial overgrowth prompting gastro-intestinal involvement. 

The muscle of the bowel and sphincter can also be affected causing either constipation or incontinence, depending on the level of involvement.   


As discussed in the other gastro-intestinal posts, diet and medications can play a huge role in the gastrointestinal symptom involvement. 

I changed my diet in 2012 and I have seen a dramatic improvement with my symptoms, particularly so, with less bloating, swelling and not as frequent toilet trips. 

To read my 2015 update, Click here, 2017 nutrition and diet update, Click here   


As has been a common theme throughout this Scleroderma Awareness Month campaign – Prevention is better than cure, and identifying certain ‘trigger foods’ to then avoid them, will help ease lower gastro-intestinal symptoms. 

My fellow scleroderma patient, American friend Kelli, has also changed her diet and seen improvements with her symptoms as a result. Kelli shares her diet / nutrition progress on the ‘Healing Loving Scleroderma with Real Food’ Facebook Page, where I assist.   

The UK Scleroderma Study Group (UKSSG) has put together some very helpful guidelines in managing the various aspects of the lower gastro-intestinal symptoms.  

To read more, Click here   
 

Sadly, for some patients, irreversible damage to the gastro-intestinal system can mean that they require a feeding tube to ensure adequate nutrition. 

The gastro intestinal system is most definitely a body part involved in the scleroderma process, which needs much more investment by way of research and clinical trials

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   


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  

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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