Margie
Kugler, Australia.
Scleroderma Awareness Month 2018.
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.
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.
2017 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.
Start each morning with a positive
attitude.
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.
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.
June 2017
June 2017
2018 UPDATE:
I have a black spot on my lungs and liver being investigated, I have a
fibroid on my uterus, I have fatigue due to Hypothyroidism and Gastroparesis.
I have fibromyalgia in all my joints.
My teeth are sore and sensitive, I may need a root canal treatment.
My eyes have been diagnosed with mild cataracts and Epiretin over the
Macula and Bletharitis.
My fingers and toes and sore and itchy due to the Raynaud’s and cramp up
now its winter.
I have heart disease with one stent and a blockage in my major artery
and dryness with Sgroggens syndrome.
I have achalasia and hiatus hernia and I am so overwhelmed, that the
anxiety is always there.
The good news is that I am also recovering from an operation, a medical
Implant for my Gastroparesis.
It is a ‘The Medtronic Enterra, Gastric Electrical Stimulator’ implanted
two months ago. I am happy to say, I am having a terrific response, considering
I have fibrosis from the Scleroderma throughout my digestive system.
I want to share my remarkable lack of previous symptoms listed below.
Current SYMPTOMS:
Dizziness, fever, aching all over stiff, super fatigued, sore fingers
and toes.
Dry and blurry eyes and mouth, shortness of breath, cant swallow or
digest meals properley.
Brain Fog, loss of memory, depression, sleeplessness, hearing problems,
neck and shoulder problems, tightness in all joints, especially in the morning.
Small energy window of being active in morning.
More good news...NO:
Bloating, nausea, vomitting, abnormal stools, less constipation and diarrhoea,
fluid retention, excess hunger or cutting pain in abdomen and chest - all GONE
or better, due to my new Gastric Implant.
Current MEDICATIONS:
Nexium, Thyroxine, Allegra, Climara. Ralovera, Metex, Metformin,
Lipostat, Aspirin, Vit D And Calcium and Vit b12.
Good news again.....I have come off these Medications:
Domperidone (Motilium)
Only take 1 x Senna tablet at night noe and stopped ENDEP for sleep.
IN BETWEEN MEDICAL APPOINTMENTS:
I write poetry, I read Angel Cards and Crystal Cards, I love walking and
listening to music, I dabble in drawing, I love reading all sorts of
metiphysical studies and courses.
I network my book THE GIFT WITHIN on my computer.
RESEARCH 2018:
The Gastric implant was not a clinical trial to my knowledge, but was an
important ‘First’ for a Scleroderma patient here, in Perth, Western
Australia.
I am blessed that the hospital is only 15 minutes away by car.
Would you advise others to take part in this?
Yes, definitely, I am now a Gastroparesis Advocate with an online
Petition going to help others with Gastroparesis, through our Medbank
Insurance.
It is at CHANGE.ORG
I was fortunate to have my device supplied by medicare and so, therefore,
I want to share my blessings with others, by starting this petition.
I love to help others like me, in any way, but mostly by writing
positive words of affirmation in all my writing.
Love and light
Margie Kugler
To read more about Margie, Click here
Huge thanks go to Margie for sharing her scleroderma reality and experience for scleroderma awareness month.
And, HUGE thanks to Margie for being a leading pioneer for our scleroderma global community with her recent gastric implant. Wishing you much more continued success, with your return to wellbeing Margie!
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
Current Unmet Clinical Needs 2018:
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
 |
| Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo. |
'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
Global Patient
Profiles Campaign Index, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click here
Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click here
Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient
Profiles Campaign Introduction, Click here
'Being your own
awareness advocate', Click here
Scleroderma Awareness
Month Flashback 2017, Click here
Scleroderma Awareness
Month Flashback 2016, Click here
My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
March 2018 Autoimmune
Disease Awareness Month, 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
To view my article 'Why Global Collaboration is Important', Click here
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as:
Early Diagnosis
Expert Specialist Centres
Access to innovative medicines
ALL being, crucial factors for best practice management and care.
To read my articles:
Raynaud's, Click here
This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, 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. Read more, here
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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
Last Update: June 2018
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