Margie
Kugler, Australia
Patient
Profiles DAY 13
June
Scleroderma Awareness Month 2017
Raynaud's, Autoimmune Rare Disease
 |
| Margie Kugler, Australia |
Name: Margie Kugler
Location: Perth, Western Australia
Diagnosis: CREST Syndrome
Year
of diagnosis: 2001
Age
at diagnosis: 39
Where
/ who diagnosed you?
Dr.
Evellynne Wong, CandleWood, Western Australia Medical Centre
What
were your presenting symptoms?
Weight
loss. My stomach was in distress – I had bloating and diarrhoea, daily.
My
eyesight deteriorated over night. I needed glasses for distance and reading.
Every
step I made, hurt, and my feet were sore.
Daily
nose bleeds.
Brain
fog where I could not remember or concentrate for long, even minutes.
How
long did it take for you to be diagnosed after first symptoms?
I
had given up smoking not long before the symptoms appeared.
I went to see my Doctor to be told that my symptoms were in my mind and probably a result from giving up smoking.
I decided to seek a second opinion.
I went to see my Doctor to be told that my symptoms were in my mind and probably a result from giving up smoking.
I decided to seek a second opinion.
We
had just moved to a new area and I contacted a new Doctor in the area.
Quote
from my book ‘The Gift Within’ …
‘14th
July 2001 …. A date I shall never forget, I sat in my Doctor’s office with
intrigue and yet denial. The Doctor read the results of the blood tests to me.
I was diagnosed with CREST syndrome – an autoimmune disorder.
‘What
is that?’, I asked, perplexed and frightened out of my wit.
She explained as
much as she knew, being unaware herself, of this rare condition.
She seemed unsure and edgy but assured me that she would refer me to the best specialists to answer any of my questions.’
She seemed unsure and edgy but assured me that she would refer me to the best specialists to answer any of my questions.’
All that
I can remember from that conversation was her saying that my immune system was
unbalanced.
The blood tests revealing specific antibodies.
Anti-centrome antibodies were the marker to say I was positive for CREST syndrome.
The blood tests revealing specific antibodies.
Anti-centrome antibodies were the marker to say I was positive for CREST syndrome.
Current
reality:
Soon after
I was diagnosed with systemic sclerosis, organ and skin involvement, with my
stomach being the major symptom which I have had to deal with since 2001.
I
have gastroparesis and have recently undergone tests to see if I am eligible
for a gastric electrical stimulator.
The
tests were with ‘Nuclear Medicine’. They included, a food dysmobility test
where I had to eat radioactive scrambled eggs, a liquid nuclear medicine to
drink, and a barium swallow test.
What
are your 3 biggest current challenges due to your diagnosis?
Depression
and anxiety
Gastroparesis
Fatigue
What
are your 3 top tips for living with your diagnosis?
Feel
as if you do have control.
You are NOT having to be lead by the disease, instead be a manifestor of your own destiny, and evolve as a healthier, happier human being.
You are NOT having to be lead by the disease, instead be a manifestor of your own destiny, and evolve as a healthier, happier human being.
Start
each morning with a positive attitude.
Plan a manageable day and include a ‘spoiling’ of yourself in a small or even large way.
Plan a manageable day and include a ‘spoiling’ of yourself in a small or even large way.
Search
for help and support in all directions of your life.
For example, a mentor / great friend to talk to, often.
For example, a mentor / great friend to talk to, often.
A
supportive, expert medical team.
What
are your 3 wishes for the future?
I am
well and I am managing every day with
faith and a happy attitude.
There
is a cure for scleroderma soon.
If
no cure, then I have conquered my challenges with depression, my stomach disease
and my heart disease is stabalised. I am positive and have a healthy mind and
spirit. With the physical body in its best condition given my many diagnoses.
To
read more about Margie, Click here
Huge
thanks go to Margie for sharing her scleroderma reality and experience for
scleroderma awareness month.
Margie
has written a book of poetry as she journalled her thoughts and feelings. It
was published in 2013. For more details and how to purchase, where Margie
donates a percentage of each copy sold for scleroderma research, Click here
To
visit Margie’s website, Click here
Margie
is also an angel card reader, having studied in the USA with Doreen Virtue.
Margie’s readings are available, here
Margie has a Pintererst site with a lovely
Poem which she wants to share for all Scleroderma Patients. Click here
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
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
Last Update: April 2018
To read more about why I chose ‘Patient Profiling and
Research’ as the focus of my 2017 campaign, Click here
Why Research and Patient Profiles? Scleroderma Awareness
Month 2017, Raynaud's, Rare Autoimmune Disease, Click here
INDEX to Scleroderma
Awareness 2016 Campaign, Click here
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
Becoming a Patient Research Ambassador for the NIHR, 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. No wages or admin costs. Thank You.
#HOPE
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