Raynauds Scleroderma Global Patients: 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 29^th June 2016, Click here

World Scleroderma Day 29^th 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

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

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

INDEX

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 19^th 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.

1^st 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.

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