Gastroparesis Awareness Month: Tests Scleroderma, Raynaud's, Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
I wrote in some detail, about how this clinical unmet need affects the scleroderma patient, here.
In this article I want to highlight some of the tests which are carried out to
determine the level of stomach damage, and the overall productivity of the
digestive system process, as a result.
Gastroparesis occurs when the stomach can not pass food down to the small intestine, thereby affecting the digestion process.
Most scleroderma patients report gastro-intestinal involvement as a symptom.
This is a very serious and most debilitating symptom, presenting itself in a whole manner of ways:
bloating, acid reflux, constipation, diarrhoea, vomiting,
feeling full after a few mouthfuls of food, nausea.... etc.
I went into more detail about these symptoms:
Upper GI Complications, DAY 21 Scleroderma Awareness Month 2016.
At the time of my initial diagnosis back in 1997, my main symptoms were the tightness of my skin, combined with stiff and swollen joints.
At
the time of attending the Scleroderma Unit for the first time, some 12
months later, I struggled to drag my body anywhere, and my skin was
super tight and itchy.
During
that time, my gastro symptoms were more of a mild inconvenience as
opposed to the high maintenance and demanding symptom which they are
now.
I do however, remain overjoyed that my ‘skin is cured from scleroderma’, having not been able to stretch my arms, in 1997.
Back in 2004, I underwent several tests to assess any internal damage to my oesophagus, stomach lining and overall gastro-intestinal system.
The first of these tests was an 'Endoscopy'. In this procedure, a tube with a camera at the end (the endoscope), was inserted down my oesophagus via my throat, through to my stomach. I had foolishly opted for not having a sedative throughout the procedure, in the hope that I could return to work later that day, as, I was still working as a barrister at that time.
The whole procedure was a nightmare from start to finish! Due to scleroderma- I struggled to open my mouth wide enough and for long enough to allow the tube to be inserted. As well as, 'swallowing' the tube was very difficult. The image gained showed my stomach lining to be extremely inflamed and red. I did not return to work for a few days!
Another test, carried out on a different day to the Endoscope, required me to eat a 'radioactive pancake'. The taste was 'ok', and after marked time intervals I was assessed by a machine which was measuring how long it took for my digestive system to process the pancake.
I have opted out from a repeat / update of these tests, as the experience still haunts me! I am hoping that my strict diet and juices will continue to keep my gastro intestinal symptoms at a tolerable level.
Back in 2004, I underwent several tests to assess any internal damage to my oesophagus, stomach lining and overall gastro-intestinal system.
The first of these tests was an 'Endoscopy'. In this procedure, a tube with a camera at the end (the endoscope), was inserted down my oesophagus via my throat, through to my stomach. I had foolishly opted for not having a sedative throughout the procedure, in the hope that I could return to work later that day, as, I was still working as a barrister at that time.
The whole procedure was a nightmare from start to finish! Due to scleroderma- I struggled to open my mouth wide enough and for long enough to allow the tube to be inserted. As well as, 'swallowing' the tube was very difficult. The image gained showed my stomach lining to be extremely inflamed and red. I did not return to work for a few days!
Another test, carried out on a different day to the Endoscope, required me to eat a 'radioactive pancake'. The taste was 'ok', and after marked time intervals I was assessed by a machine which was measuring how long it took for my digestive system to process the pancake.
I have opted out from a repeat / update of these tests, as the experience still haunts me! I am hoping that my strict diet and juices will continue to keep my gastro intestinal symptoms at a tolerable level.
Thankfully, my symptoms are currently stable. I
have regular monitoring appointments. These include annual heart and lung tests.
I am now living with the damage which, the disease at its most active, caused.
Juices are most definitely the way forward for me to feel better. I have scleroderma induced gum recession, making chewing very difficult. As well as, I have a constant dry mouth, so soft foods only!
The
2 main juices which I have daily are a Vitamin C smoothie and a green
juice.
My lovely American friend, Kelli Schragg, ('Healing Loving Scleroderma with Real Food' Facebook Page), Dr Susan Nyanzi, Roy Louden, and UK patient Vanessa Cummings have seen improvements with their symptoms from a diet change.
A few months ago, Australian patient Margie
Kugler became one of the first scleroderma patients to have a gastric
stimulator fitted.
In a few weeks, on his birthday, our little hero Wyatt The Warrior is due to have a gastric stimulator fitted. Please hold Wyatt and his family in your prayers, 'Stay Strong Wyatt!'
In a few weeks, on his birthday, our little hero Wyatt The Warrior is due to have a gastric stimulator fitted. Please hold Wyatt and his family in your prayers, 'Stay Strong Wyatt!'
Nearly all of the patients included within my Scleroderma Awareness Month 2017 and 2018 campaigns, reported Gastro-Intestinal symptoms, as one of their many current health challenges. INDEX.
There are many unmet clinical needs, which patients have in common:
CALCINOSIS, Click here
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
SCLERODACTYL HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, Click here
GASTROINTESTINAL,
Click here
Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.
An investment in medical research will most certainly
improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.
I am honored to be a patient research ambassador with the National
Institute for Health Research. video.
Overall, for optimum
patient care, 3 hallmarks preside:
Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community.
Living the dream, scleroderma style.
Follow:
Facebook Page: Raynauds Scleroderma Awareness Global Patients
Facebook, Instagram, YouTube, Twitter:
@SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
Please DONATE to help fund life saving medical research at The Scleroderma Unit, Royal Free Hospital, London.
100% of your monies
will be used for medical research purposes only. Thank You.
An edited version of this article was first published August 2018, in my column with Scleroderma News.
Planning for the Future, Click here
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
An edited version of this article was first published August 2018, in my column with Scleroderma News.
To Read My 2019 Articles:
Leaving a gift in my Will, Click here
Planning for the Future, Click here
Celebrating 20 years of being a patient at the Scleroderma Unit, Click here
2019 New Challenges, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
SCLERODERMA:
Order your awareness t-shirt here
 |
| June 2019 |
 |
| Huge Thanks to Ellen, Dianne and the Royal Free Charity team |
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, Sept 2017 |
This year, 2019, I am celebrating 21 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
Read more, here.
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. Along with the
Raynaud's world trail blazer, Dr Kevin Howell.
I am truly humbled and inspired by their work ethic and commitment to
their patients.
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.
Read more about me, here
World Scleroderma Day
2018, Click here
World Scleroderma Day 2017, 29th June, Click here
World Scleroderma Day
2016, 29th June. Origins of the date, Click here
World Scleroderma Day
2015, 29th June.
 |
| James Carver, myself, Prof Chris Denton |
I had the pleasure of being a presenter and part of
the European co-hort who gave a presentation at the European Parliament,
Brussels, in honour of World Scleroderma Day 2015.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
Raynaud's:
October:
Raynaud's, Click here
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
here
To read My ‘Invisible
Disability’ experience, Click here
Facebook Page: Raynauds Unit Royal Free Hospital
Twitter: @RaynaudsRf
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. NO wages or admin costs. Thank You.
Last Update: August 2019.
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