Nearly 50 Years with Islit: A Long Hauler’s Report, by Riva Greenberg

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June 16 2021
https://www.healthline.com/diabetesmine/nearly-50-years-with-type-1-diabetes-a-long-haulers-report
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Riva says "I’ve lived with [Islit, Insulinitis,
near-total to total loss of endogenous
insulin, and despite the 1st post about
Riva that I made in 2010 -see below- in
which she advocated for new names for
the 7 Disparate High Glucose Conditions, ...

... actually only calling for new names for
'type 1 diabetes' & 'type 2 diabetes', she
still calls it 'type 1 diabetes (T1D)' or calls
it 'diabetes' with no clarifier] for 49 years,
and this past year the ground feels a bit
shakier under my feet.

I have discovered a second truth about liv-
ing with Islit." [see article for details regard-
ing some consequences of her dealing with
Islit and some other health conditions for al-
most 50 years]

The following article says she got Islit at
age 18 in 1972, so in June 2021 she was
almost 68 years young, & likely has turned
68 by now. She got it 11 years after I got it
at age 5 in March 1961. I recently turned 66
years young.
https://www.diasome.com/post/historical-gratitude-and-where-we-still-need-to-innovate-heartware

Some previous mhd posts with information
from or about Riva Greenberg that I've pos-
ted in mhd over the past 11 years:

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March 5 2019

How Many Chances I Have to Be
Wrong Every Day With [Islit]?
by Riva Greenberg
https://www.yahoo.com/news/many-chances-wrong-every-day-003221871.html
- - -

- - -
July 20 2016

Insulinitis Sequelae: Do
You See Them Coming?
https://groups.google.com/g/misc.health.diabetes/c/xAL9-3RdLcU/m/lg49NucuCgAJ
- - -

In the following, Riva Greenberg, an individual
with many years of dealing with Insulinitis*,
comments on the long-term sequelae she attri-
butes to having battled Insulinitis*. ...

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March 12 2014

Diabetes’ civil war
https://www.latimes.com/health/ct-met-diabetes-rift-20101122-story.html
- - -

... Diabetes educator Riva Greenberg has repeat-
edly advocated for a name change, hoping that
greater recognition will lead to more stem cell
research.

“When the two types are lumped together, it’s
hard for organizations committed to finding a
cure to Type 1 to really get funded,” said Green-
berg ...

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June 10 2010

Another person with Insulinitis who
supports a name change for type 1
diabetes
https://groups.google.com/g/misc.health.diabetes/c/TmnGC8iv2w8/m/ZBiJ32_Iyx8J
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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 Auto-
immune 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

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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).

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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

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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

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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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