Gastroparesis
Awareness Month – August.
Scleroderma,
Raynaud's, Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
The month of August is Gastroparesis Awareness month.
Gastroparesis occurs when the stomach can not pass food down to the small intestine, thereby affecting the digestion process.
Gastroparesis is an
unwelcome and debilitating symptom to most scleroderma patients, myself included.
Symptoms include: bloating, acid reflux, constipation, diarrhoea, vomiting, feeling full after a few mouthfuls of food, nausea.
I went into more detail about these symptoms:
Upper GI Complications, DAY 21 Scleroderma Awareness Month 2016.
Throughout the seven years following my initial diffuse scleroderma diagnosis, 1997 - 2004, I
consumed a combination of immunosuppressants, chemotherapy and
steroids. This cocktail of powerful drugs along with the scleroderma
disease process, has left my gastro-intestinal system to be extremely
'fragile'.
During
those initial years, I was working as a barrister, whilst taking 2g of
Cellcept a day. I would start my day with intense abdominal pain which
would last for hours, combined with frequent bathroom trips.
In
an attempt to try and remove this time consuming and debilitating start
to my day, I would not eat very much the previous night. Obviously,
this was not a satisfactory long term solution. Sadly, it resulted in me
having to cease my 60 hour a week role, to focus on repairing the
damage to my scleroderma attacked body.
In
December 2012 I had an epiphany moment. I was feeling so ill, lethargic
and fed up at having to spend another day in my bed, that I bought a
juicer, Nutri bullet and I started the Jason Vale 7 day juicing program.
By Day 2, I noticed a difference. I was starting to regain some
vitality, even if it did not last for very long, at that time.
Infact
nearly 6 years later, I am still including daily juices in my diet.
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. This way, I am making sure that my body is being given a 'full
on' nutritional hit, and by-passing my dental obstacle challenges.
By changing their diet, and avoiding certain 'trigger foods', other
fellow patients have also seen fantastic results with an improvement in
their symptoms and their overall feeling of wellbeing.
My lovely American friend, Kelli Schragg, has set up the
'Healing Loving Scleroderma with Real Food' Facebook Page, which I help
with. Kelli shares her juicing tips and documents her progress.
Other patients who have changed their diet and 'upped their game' with managing their symptoms, include USA patients Dr Susan Nyanzi and Roy Louden. UK patient Vanessa Cummings also includes juices to her diet.
A few months ago, Australian patient Margie
Kugler became one of the first scleroderma patients to have a gastric
stimulator fitted. Margie is making tremendous progress and is most
certainly an inspiration to our global community. Thank You Margie for
being a scleroderma trial blazer- we are most grateful!
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, and thus, a current unmet clinical need. Patient Profile INDEX.
Other unmet clinical needs include:
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 very much recommend for any patient to take part in a clinicaltrial run by a center of excellence.
I am honored to be a patient research ambassador with the National
Institute for Health Research. Check out this video.
My patient profile campaigns showed that
three hallmarks preside for optimum
patient care:
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
Twitter, Instagram, YouTube:
@SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
Please DONATE to help fund medical research
at TheScleroderma Unit, The Royal Free Hospital,
London.
100% of your monies
will be used for medical research purposes only. Thank You.
August 2018.
Planning for the Future, Click here
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
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.
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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