Download Living with an Invisible Disease

Living with
an Invisible Disease
Growing Up in this Body
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Imagine being told you are crazy by
an assortment of doctors over many
years.
◦ Would you begin to wonder if they
are right?
Imagine being told over and over,
“You don’t look sick”.
◦ Would you begin to wonder if perhaps
it is all in your head?
I have been living with an invisible
disease all of my life. It took over
40 years to be diagnosed.
Ehlers-Danlos
Syndrome is a group
of disorders that
affect connective
tissues: the tissues
that support the
skin, bones, blood
vessels, and other
organs. It is a
fault in the
mechanism for
producing collagen.
Ehlers-Danlos Syndrome
Blood vessels can
tear unpredictably,
causing internal
bleeding, stroke,
and aneurisms
Dysautonomia is a
full-body condition;
a nervous system
disorder with a
large number of
symptoms that
greatly alter my
quality of life.
Dysautonomia
Each patient with
dysautonomia is
different — some are
affected only
mildly, while others
are left completely
bed-ridden and
disabled.
Encyclopaedia of Diseases
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Ehlers-Danlos Syndrome (Type IV Vascular) – I do not produce enough collagen and that
affects the capacity of my heart to stretch and contract as it pumps.
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Arrhythmia – I experience the following irregular heartbeat types, as recorded on ECGs,
which have escalated over time and are now ongoing.
◦ Premature atrial complexes – the premature beat initiates outside the sinoatrial node
causing another area of the atria to depolarise
◦ Premature junctional complexes – a premature beat arising from an ectopic focus within
the atrial / ventricular junction, which causes a compensatory pause and catch up heart
beats
◦ Premature ventricular contractions – the heartbeat is initiated by Purkinje fibres in
the ventricles rather than by the sinoatrial node, which is a sign of decreased
oxygenation to the myocardium (cardiac muscle)
◦ Right bundle branch block - the electrical impulse is delayed in reaching the right
ventricle, so the electrical signal spreads across the ventricles sequentially, as
opposed to simultaneously
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Global LV systolic dysfunction – My weakened heart muscle does not have the strength to
adequately eject blood, with a reduced left ventricular ejection fraction of 54 per cent.
Encyclopaedia of Diseases
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Hypotension – as low as 70 / 32. My blood pressure is about as low as is possible to be
alive, which makes my heart work extraordinarily hard to try to circulate adequate blood.
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Hypovolemia (low blood volume) – I have about one litre less blood in my body than is
normal, which is a dysfunction of nerve activity on blood vessels. This causes the low
blood pressure and the high heart rate.
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Interventricular septum thinning – my interventricular septum is abnormally thin, but has
no defect present at this stage. I am being monitored for possible rupture.
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Ischaemic cardiomyopathy – Because of the low blood volume, I have reduced blood flow to
the heart that causes cell starvation secondary to a lack of oxygen. I do not have plaque
or cholesterol build up in my arteries.
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Postural Orthostatic Tachycardia Syndrome - The POTS is a function of the Dysautonomia. My
heart beats overly fast when I wake up / sit up / stand up or do anything out of rhythm,
trying to get enough blood to my brain. POTS has anxiety- and hyperactivity-like symptoms,
the body not being able to regulate its temperature, even restless legs.
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Ventricular Tachycardia – Unmedicated, my resting heart rate is 120 beats per minute, my
moving rate is around 180 and my exercise rate is around 200.
Encyclopaedia of Diseases
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Dysautonomia – a full-body condition; a nervous system disorder with a large number of
symptoms that greatly alter my quality of life. Symptoms include inability to regulate my
body temperature, my circadian rhythm, my blood pressure, my heart rate. I cannot produce
enough blood.
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Hashimoto’s thyroiditis – Hashimoto’s is an autoimmune disease in which the thyroid gland
is attacked by a variety of cell- and antibody-mediated immune processes. My thyroid gland
is an irregular size, shape and texture. The symptoms include chronic fatigue and muscle
weakness.
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Insomnia – I have not had a sleep rhythm for the whole of my life. I get short bursts of
around two hours at most until I hit a point of exhaustion and then I am not sleeping, I am
unconscious. This means that I rarely experience restorative sleep. New medication has
helped this in the last two months.
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Malabsorption – This is the pathological interference with the normal physiological
sequence of digestion (intraluminal process), absorption (mucosal process) and transport
(postmucosal events) of nutrients. Essentially, I have malnutrition and have had for a
very long time. The problem is that it seems to be escalating and I am getting pretty
skinny. I now weigh under 60kg, which is about 5kg less than a woman my height and age
should weigh.
I have had three
heart attacks in the
last six months. I
live with daily
chest pain caused by
arrhythmia.
Living with EhlersDanlos Syndrome
means my heart
operates as though
it is 90 years old.
Heart Attack
The median age of
death is 48 years.
I will be 45 in
November.
After the last
heart attack, I
lost my mobility.
The extra blood
in my skull put
so much pressure
on my brain stem
that it shut down
the nerves to the
left side of my
body.
Learning to Walk Again
I spent two
months in a
wheelchair,
unable to walk
unassisted.
Managing the Disease
I manage the
diseases with a
concoction of
medications to
slow my heart
rate; increase my
blood pressure;
put me to sleep;
wake me up;
digest my food;
shut down my
adrenal activity;
and, deactivate
my autoimmune
system so that it
doesn’t kill off
my body.
There is no cure for
vascular EhlersDanlos Syndrome and
there is no cure for
dysautonomia.
The best I can hope
for is access to the
treatment that will
teach me how best to
manage my body to
maximise the years I
may live in it.
What Next?
That treatment is
not available in
Australia, only in
the United States.
How Can You Help?
The POTS Treatment Center
The Hippocrates Health Institute
ww.potstreatmentcenter.com
www.hippocratesinst.org
There is a specialist treatment centre for
Postural Orthostatic Tachycardia Syndrome (POTS)
in Dallas, Texas. At The POTS Treatment Center a
wide range of procedures are used that are unique
to the needs of the person.
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Biofeedback
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Heart Rate Training
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Nutrition & Exercise Protocols
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Counselling
The goal of this program is to get to the root of
the problem by controlling the Autonomic Nervous
System (ANS) and thereby directly addressing
the dysautonomia. Regulation of the Autonomic
Nervous System is done without medication, and
making this a permanent change for me to be able
to function normally again. I should eventually
be able to establish an automatic thermostat
within my body that controls my bodily functions.
The goal of The Hippocrates Health Institute is
to assist people in taking responsibility for
their lives and to help them internalise and
actualise an existence free from premature aging,
disease and needless pain. At Hippocrates, the
team of caregivers strives to give each and every
guest the tools they need to learn how to help
them help themselves.
The nine-week program not only provides
participants with a concise introduction to the
health benefits of a raw, plant-based diet, but
involves complementary therapies and related
disciplines that are essential to a healthy and
well-rounded approach to life, as well as a
career path to help others take responsibility
for their lives.
This means – I will be bringing the technology
home to Australia for the benefit of others
suffering dysautonomia and other diseases.
Why Support Me?
My life has always
been about others.
I have:
- built 5 homework
centres for
Aboriginal children
in the Goldfields
- built an adult
education centre in
the Kimberley
- developed social
recovery programs
for a community
ravaged by flood
- put a roof over
the heads of 1,674
Aboriginal kids so
they could go to
school
I have had to retire
from full time work
and a career I have
loved. That doesn’t
stop me being a
contribution though.
What am I doing now?
Now, I am a resident
at Wild Twig
Studios. I mentor,
develop and promote
artists with the
goal of having them
in financially
sustainable
businesses. I even
get to develop the
youngest generation
of artists.
How Can You Find Out More?
Ever thought you would like to support someone, but don’t
know how? There are several things you could do:
1.
You could make a donation that would contribute to my
treatment and care – www.mycause.com.au/page/69721.
2.
You could share my Facebook page with your friends,
colleagues and associates –
www.facebook.com/100YearsForTracy.
3.
You could follow my blog and get an understanding of what
it is like to live with an invisible disease –
www.100yearsfortracy.wordpress.com.
4.
You could assist with the fundraising campaign to bring
diagnostic and treatment technology from the United States
to Australia.
While this cause may be too late to save my life, it will
impact on the young people behind me. This is my legacy.
Contact Details
Tracy Wilkinson-Adams
PO Box 253
Melville WA 6956
M: 0414 392 822
E: [email protected]
If not you, who do you know that can forward this cause?
Please share, someone you know might make the difference.