Courtney Pitson, Islit since age 2, now age 23

[_]

Islit - Insulinitis, near-total to total loss of
endogenous insulin.

~~~

Revealing expose about what it's actually
like dealing with Islit for the last 21 years,
from Courtney Pitson, Islit at age 2, now
age 23, a refreshing dose of unabashed
frank honesty:

[clarifying inserts in brackets along with
translations where appropriate]

July 12 2021
https://hercanberra.com.au/active/wellbeing/never-normal-meet-courtney-pitson-fighting-an-invisible-illness-that-leaves-emotional-scars/

Never normal: Meet Courtney Pitson, fighting
an invisible illness that leaves emotional scars

... the reality of living with this often misunder-
stood condition. ... Imagine making an extra
180 decisions every day, when one wrong
choice could mean the difference between life
and death. This is reality for 23-year old Court-
ney Pitson.

“Everyone talks about being at the stage where
you accept a diagnosis… I’m never going to get
to a point where I’m like, ‘I’m okay with this’ be-
cause I’m just not,” she says.

... “My dad is [an individual with Islit] ...”

... Courtney is just one of the 125,000 people in
Australia diagnosed with Islit (current population
25,790,826, 1 in 206 Australians have Islit).

... blame, shame and guilt are commonly felt by
[individuals with Islit] as they try to navigate their
day to day lives and ride the highs and lows of
living with Islit.

This year, National [-7- Disparate High Glucose
Conditions (DHGCs)] Week runs from 11-17 July &
focuses on challenging [DHGCs]-related stigma,
giving voice to the real impact [DHGCs] can have
on a person’s mental and emotional wellbeing.

For Courtney, the emotional and physical drain is
never-ending.

“There’s not a lot of awareness for how difficult a
chronic illness really is. There’s a lot of sleepless
nights and then exhausting days,” says Courtney.

“You grow up very very quickly and people say
‘Oh you’re so strong, you’re so resilient and as
nice as that is, it’s actually really hard. I’d rather
not be strong, I’d rather not be resilient, I’d rather
not be that mature for a 12-year-old, that’s trauma ...

... and unfortunately with Islit it’s just trauma day in,
day out, you never get a day off.”

Never normal

Growing up, Courtney says there was never a mo-
ment where she felt normal.

While her parents endlessly advocated for her &
she advocated for herself as the face of the Islit
Research Foundation (JDRF), the sense she was
missing the fun and frivolity of her childhood was
never far from her mind.

If she left her health unchecked she could suffer
from nerve damage, kidney disease, eye disease,
gangrene and other severe complications. If she
had a bad day, she could suffer a seizure or slip
into a coma. While her family tried to help her ...

... manage Islit, Courtney is unlucky enough to be
one of the only Islit individuals in the world to suffer
from small strokes when her blood sugar goes too
low.

“I remember spending time in the hospital because
I had a massive stroke. I remember spending the
holidays in the hospital because, again, I’ve had a
stroke,” she says.

“I distinctly remember one time, I woke up and we
were meant to be going to Questacon, my sister,
my dad and I, and I couldn’t sit up…that happened
more than once where I would have strokes and I
would feel so guilty because I would ruin the plan.”

Finally at the age of 11, after dealing with endless
doctors and charities who ‘truly don’t understand’,
Courtney decided she wanted to be normal and
stopped caring for her Islit altogether.

[hmmm, well, she had to give herself exogenous
insulin to stay alive, so she's expressing a certain
degree of decreased monitoring, not an actual stop-
ping of everything]

“I don’t think, certainly in my experience, that I got
the help I needed with mental health. I went off the
rails, it probably started in Year Six… I didn’t want
to be [an individual with Islit] anymore and I wanted
to be cute and I wanted to be fun and to be normal,”
Courtney explains.

“So I stopped doing finger pricks and I stopped using
my insulin pump.”

“I finished school when I was 17, and I could count on
my hands the amount of times my friends in my whole
high school life saw me do a blood test, saw me do a
needle. It was so minimal, I had absolutely no desire
to look after myself.”

Emotionally exhausted and overwhelmed by the de-
mands of [dealing with Islit], Courtney sunk into a
never-ending circle of rebellion and guilt as she tried
to live a normal teenage life.

“I definitely wish I had more awareness of mental health
services that I could have accessed at the time. The hos-
pital certainly told my parents about free counselling but
I didn’t want to go and nobody explained to me why it
would be beneficial. And nobody explained to my parents
why it would be beneficial,” she says.

Invisibility, mental health and emotional scars

Statistics show that [Islit individuals] are twice as likely
to develop mental health issues such as depression or
anxiety.

... “I have so much unresolved trauma from Islit, in addi-
tion to everything else going on in my life. I don’t remem-
ber huge chunks of my childhood, which as I get older,
makes me sad. But I think that comes down to being an
[Islit individual] & having memory loss from having strokes
that they never picked up on,” says Courtney.

“Now as an adult, I’m trying to process the trauma & deal
with the trauma and deal with the fact that I’ve blocked
out 95% of my childhood.”

“My mental health has taken a huge hit. I think anyone
who’s [an Islit individual] would have to admit that, be-
cause how could it not?”

Even while she tried to live her normal life, Islit always
sat at the back of Courtney’s mind. There was a con-
stant promise to herself that she would do better, she
would try, until her feelings of anger and sadness would
rise again.

It wasn’t until she had an extreme hypoglycemic attack
while travelling to Thailand for her 21st birthday, collaps-
ing in Singapore during the layover, that Courtney deci-
ded to do something.

“Even though I’ve had mini-strokes and stuff before, I
came to terms that this is the rest of my life and if I don’t
do anything now, I’m going to die,” she says. “I still can-
not explain how I feel about it. It’s so terrifying that it can
happen at any point in time…I think it just shows how
aggressive Islit can be sometimes.”

The emotional impact of her experiences and the lack
of support she has felt as [an Islit individual] ... is some-
thing Courtney is incredibly passionate about. While she
will never stop advocating, she says she is tired of always
being the one to speak up.

This National [-7- Disparate High Glucose Conditions]
Week, Courtney says she wants the community to know
that while Islit is invisible, the emotional scars it leaves
are very real.

“It can happen to anyone,” she says. “I wish people were
more aware of the symptoms and how dangerous they are
and how rapidly your life will change.”

“There’s a projected idea that being [an Islit individual] is
okay, that it’s not that hard, but it’s actually really hard. I
wish that people knew how hard it is and how it really does
change your life forever.”

~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~ ~~~

INSULINITIS (ISLIT)

New SUPERIOR clarifying name for near-
total to total loss of endogenous insulin
https://prohuman.net/pix2/new_superior_clarifying_name_is_INSULINITIS.jpg

The overwhelming majority of Islit caused by
autoimmune attacks on pancreatic beta cells
(Insulitis Islit) but there are

o 15 specific types of rapid onset Islit, a
rare condition (only present in < one-half
of 1% of Americans & in a much lower rate
in most of the world), when present is typ-
ically diagnosed at age under 30
(50% at age < 18, 20% at age 19 to 29)

o 1 slow onset specific type, Latent Autoim-
mune Islit, frequency unknown but per a
recent report, misdiagnosed as Cellosis
(new clarifying name for type 2 diabetes)
almost 40% of the time due to its slow
onset and its occurrence typically at age
over 30

Old outdated anachronistic name for Islit is
type 1 diabetes, confusing in that diabetes
without clarifier is often used to describe
this condition which is 1 of the 7 Disparate
High Glucose Conditions (DHGCs).

That makes figuring out which DHGC is actu-
ally being referred to (and it can be any one,
or some, or all of them when the diabetes
or diabetic word is used without clarifier)
confusing / difficult:
https://prohuman.net/pix2/diabetesdiabeticguessinggame.jpg
https://prohuman.net/pix2/diabetesdiabeticconfusion.jpg
https://prohuman.net/pix2/diabetesdiabeticendingthemisunderstanding.jpg

- - -

It's estimated that 5% to 11% of Islit individuals
will die from severe hypoglycemia, the highest
risk of that being while sleeping (i.e., dead-in-
bed syndrome).

- - -

Shocking Misdiagnoses of Islit at All Ages
https://clinical.diabetesjournals.org/content/diaclin/37/3/276/F1.large.jpg

at ages 0-6 ........ 21%
at ages 7-12 ...... 15%
at ages 13-17 .... 14%
at ages 18-29 .... 30%
at ages 30-39 .... 46%
at ages 40-49 .... 48%
50+ .................... 55%

Table showing Islit primarily misdiagnosed as
- Cellosis (new superior clarifying name for
type 2 diabetes) in adults, 76.8%
- Flu/Viral Infection in children, 53.7%
https://clinical.diabetesjournals.org/highwire/markup/8771/expansion

Details on Shocking Islit Misdiagnoses &
Islit Ketoacidosis is the Leading Cause
of Death in Islit Children & Young Adults
https://clinical.diabetesjournals.org/content/37/3/276

- - -

Insulin / Insulin Pump / CGM I use

Fiasp Ultra-Fast-Acting Insulin in a
tubeless Omnipod insulin pump catheter
placed into skin / pod with adhesive
stuck onto skin every 80 hours, control
via PDM (Personal Data Manager)
https://prohuman.net/pix2/Fiaspinsulin_tubelessOmnipodDASHinsulinpump.jpg

Dexcom G6 CGM (continuous glucose monitor)
https://prohuman.net/pix2/Dexcom_G6_CGM.jpg

- - -

Diabetes Bubble / Diabetes Bubble Burst
Outstanding! https://prohuman.net/diabetesbubblediabetesbubbleburst.htm

C.ure I.nsulinitis A.ssociation
Please! https://prohuman.net/cureinsulinitisassociation.htm

Glucose Anomalies Research regarding
Potential Cures / Improvements in Treatments
Great! https://prohuman.net/glucoseanomaliesresearch.htm

Stop Diabetes/Diabetic Confusion
with New Superior Clarifying Terms
https://www.change.org/stopdiabetesdiabeticconfusionwithNewSuperiorClarifyingTerms

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