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.
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
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
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:
The conclusions of which suggested that gastro-intestinal bacteria flora:
‘may be a pathological feature of the SSc
disease state.’
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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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:
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 Day Patient Voice
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
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
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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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