Discover and read the best of Twitter Threads about #T1d

@sakamping

Sehr geehrter Herr @Karl_Lauterbach,
wie kann es sein, dass #Insulin schon wieder nicht lieferbar ist? Das Problem besteht nun schon seit dem letzten Jahr. Ich erinnere mich, dass ich damals schon bei Glatteis durch ganz Hamburg gefahren bin, um die Apotheken abzuklappern.
1/7

Wie kann es sein, dass (über-)lebenswichtige Medikamente nicht vorhanden sind? Neulich war es Amoxi, ein (zugegeben nicht ganz so überlebenswichtiges) Allergiemedikament, und das überaus wichtige Insulin.
Warum gibt es keine zentrale Datenbank? Wieso kann man nicht zentral
2/7

abfragen, wer wo welche Medikamente vorhanden hat? Wieso ist mein Rezept nur 4 Wochen gültig? Wieso muss ich jetzt erneut zum Arzt um ein anderes Rezept für eine andere Darreichungsform desselben Medikaments bekommen? Wieso muss ich überhaupt alle naselang zum Arzt um eine
3/7

Read 7 tweets

Tom Dean

@welshy_89

I've been using my Smart Insulin Pens (SIPs) for 14 months now & they've been a resolution in how I feel about my diabetes, how I manage my diabetes & how passionate I am to help others & to advocate. This thread🧵collates some of the things I've been part of to raise awareness.

I do hope you find it helpful & hopefully take something away from the thread. There are lots of pictures, links, videos and helpful resources.

If you have any questions, please fire them to me 👍 Always happy to help 😀💙

* btw- SIPs is short for Smart Insulin Pens.

To start... I'd like to ask you guys a question.

Q: Do you know anything about Smart Insulin Pens?

Have you used SIPs? How did you hear about them? What do you/don't like about them?
Please feel free to share your experiences and any pictures you have in the comments below 💬👇

Read 23 tweets

Mike Lee

@BasedMikeLee

🧵 1. @US_FDA often stalls progress on otherwise-promising treatment options for people with type-1 diabetes. #T1D

2. For example, I’ve long criticized FDA for tight grip it holds over glucose monitors (CGMs) and other diagnostic devices. Its approach benefits a few market incumbents and hurts would-be competitors.

3. I’ve also long held that at least some of the price spikes we’ve seen in insulin are the product of regulatory problems created by FDA, which artificially constrict the market for insulin. This is good for a few pharmaceutical companies but bad for all others.

Read 20 tweets

Dr Rasmussen

@StandingHannah

7 weeks ago today the boy woke up having soaked through 3 diapers sobbing because he was so thirsty. Diabetes was in the back of my mind for a few days but I thought it couldn’t possibly be that #autism #t1d

I took him to our doctor and just waited until they could see us. Within 20 minutes of him being seen we were at emerg. It was diabetes. #t1d

He had a yeast infection on his stomach from sweating sugars but before I was told it was a diaper rash because he’s “too old to be in diapers” (he’s only in bedtime diapers). It couldn’t be diabetes

Read 9 tweets

Dr Rasmussen

@StandingHannah

The Boy’s blood sugar dropped to 1.2 twice this week at school. He was floppy. his amazing EA realized what was happening & had rescue meds with her. Kids without an EA don’t have this support. He could have died. Schools need a nurse. #onted #onpoli #t1d #autism

And @Sflecce your for profit nurses almost killed my kid when they tried to give him twice the dose of insult. So don’t pretend you are doing anything #onpoli #onted

And if you didn’t know (I didn’t know). Below 2.8 you may lose consciousness and die. So that’s what @Sflecce and his nonnas are ok with doing to kids with diabetes .

Read 4 tweets

James Ridgeway

@JamesRi81958925

1/14
Time for another #thursdaythread in collaboration with @diabeteschat.

This one is about 'time in range' (TIR)⏰

It was requested during this week's #diabeteschat session.

This thread aims to define TIR and identify recommendations for TIR.

2/14
What is 'time in range'?

It is a measurement of CGM sensor data highlighting how much time glucose levels are within a specific glucose range for a 24 hours period:
· 3.9 – 10.0mmol/L (70 – 180 mg/dL) for adults.
· 3.5 – 7.8mmol/L (63 – 140 mg/dL) during pregnancy🤰

3/14
Where did TIR come from?

In 2019, the @ATTDconf congress brought together a panel of individuals: #pwd, healthcare professionals and researchers with expertise in CGM.

They developed CGM target percentages of time within, below and above the glucose range⏰

Read 15 tweets

James Ridgeway

@JamesRi81958925

1/14

Time for another #ThursdayThread🧵

In collaboration with @diabetes_chat.

This one is all about diabetes-related language🗣️

For me, it is a topic that really does matter🌟

#diabeteschat #GBDoc

2/14

Language is a sensitive subject for many with #diabetes, and so it should be.

Words spoken or written can affect the receiver in many different ways.

So it's important to be aware of language that an individual with #diabetes has a like 👍/dislike👎 to.

3/14

As a person who lives with #t1d I prefer to say that I am a person who lives with #diabetes rather than a diabetic.

But I know others that prefer to be called a 'diabetic'.

What do you prefer?👍

Read 14 tweets

James Ridgeway

@JamesRi81958925

1/15
Time for another #thursdaythread 🧵

In collaboration with the brill @diabetes_chat

This week is all about #diabetes diagnosis.

A moment that I personally will remember forever.

#diabeteschat #gbdoc

2/15
Do you remember the date when you or your family member were diagnosed with #diabetes?

Or as I call it 'D-day'.

3/15
Mine was 4008 days ago on 12th February 2012 🗓️

My blood glucose level was 30.6mmol/L🩸

I had my glucose measured in accident and emergency🏥

But the events that led to that moment was not smooth.

Where were you or your family member diagnosed with #diabetes?

Read 15 tweets

James Ridgeway

@JamesRi81958925

1/16
Time for another #thursdaythread 🧵
The first in collaboration with the awesome @diabetes_chat
This one is all about #diabetes peer support 🫂

#diabeteschat #GBDoc

2/16
This thread will help you to:
- Understand what peer support is.
- Identify the benefits and interests of peer support.
- Highlight the principles of peer support.
- Discuss key examples of peer support.

The information is from a presentation I did today for @uhlinptdiab

3/16
So first let's find out what peer support is.

Here is a nice short video which gives a great explanation.

Read 16 tweets

James Ridgeway

@JamesRi81958925

Pens to Pumping

1/14

It's almost 200 days since I started using an insulin pump🗓️

So I thought I would reflect by creating a🧵covering:
What is pump therapy?
Why I switched from MDI?
What pump I chose and why?
How I switched?
What difference has it made?

#gbdoc #diabeteschat

2/14

What is pump therapy?

Insulin pump therapy is also known as a continuous subcutaneous insulin infusion (CSII).

It's basically a programmed pump that delivers rapid acting insulin through an infusion set to help manage glucose levels.

3/14

What type of insulin pumps are there?
There are two main types:

One type are tethered e.g. @TandemDiabetes T Slim, @MDT_Diabetes 780G, @mylife YpsoPump.

These pumps consist of a portable pump device, a canula that is inserted into the skin, and small tubing.

Read 14 tweets

Harriet Minter

@HarrietMinter

#worlddiabetesday and also two years to the day since I went to A&E thinking I was just a bit stressed & left three days later with a diagnosis of type 1 diabetes. This is what I’ve learned in two years of managing a chronic condition that most people think is a joke 🧵:

1. It’s physically exhausting. Essentially your body is trying to kill you and spending a lot of energy on that, so it makes everything else twice as tiring as it was before. Be nice to your friends with diabetes, they are exhausted.

2. The mental load is insane. Every time you eat anything / do any exercise / the weather changes (seriously) you have to do advanced level maths to work out what impact this will have on your blood sugars and how you will manage it.

Read 10 tweets

Evie Asterwyn | Author of The Star Kin Chronicles

@EvieAsterwyn

Regarding @LillyPad and the false announcement that insulin would be free. From a girl living in a country (NZ) where insulin costs me, through our big pharma subsidisation program $5 per insulin type per quarter, and OTC around $40-60 a vial. A Thread. /1

@LillyPad First of all, I'm tagging you in every tweet of this thread. Hopefully all your rich disgusting shareholders will read this and realize the true cost of the money you feed them. After hearing what I went through, I hope your black hearts give out. SHAME ON YOU ALL! /2

@LillyPad I am a 38 year old, who was diagnosed in '85 at 3 yrs old with this nightmarish, unforgiving, difficult to control, and stressful disease, Type 1 Diabetes (T1D). As with most diabetics I was put on a regime of 2 insulins per day, a long acting twice a day, which /3

Read 26 tweets

Tim Street

@Tims_Pants

If you're in #Lomdon and have #T1D, you may be interested in this thread. It outlines the @NHSLdn_CN for Diabetes pan-London plan for #cgm access.

There are three linked documents and some commentary.

#GBDoc

/1

The first document is the written pathway, that outlines the suggested implementation of NG17 across London:

england.nhs.uk/london/wp-cont…

#CGM
#GBDoc
/2

The second document is a list of systems, split into three lists.

List 1 is the "specialist rtCGM" that needs your clinic involvement.

List 2 is FP10 (on prescription) rtCGM.

List 3 is FP10 isCGM (scanned).

england.nhs.uk/london/wp-cont…

#CGM
#GBDoc
/3

Read 10 tweets

Nat’s Pancreas 404 🐝 #COVIDisAirborne

@1derfultype

🧵How can #HCP assist people who chose to use #DYIAID?

The @OPENDiabetesEU ⤵️
▶️ Katarina Braune is a co-founder
▶️ Patient-led
▶️ 2/3 of the international team live w/#T1D
▶️ #OpenSource #AID data

#ISPAD2022 #dedoc°voices #wearenotwaiting @dedocORG @ispad_org 1/n

How can #HCP assist people who chose to use #DYIAID?

#wearenotwaiting movement ⤵️
Because DIY #ClosedLoop systems have been so life-changing for them and their kids, they decided to make it available for all.

#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 2/n

How can #HCP assist people who chose to use #DYIAID?

International consensus statement on #OpenSource automated insulin delivery ⤵️
✅ Published in @TheLancetEndo on Nov 13 2021
▶️ thelancet.com/journals/landi…

#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n

Read 22 tweets

Nat’s Pancreas 404 🐝 #COVIDisAirborne

@1derfultype

@lifeforachild /@ispad_org survey - shifting responsibility:
'I am an advocate because I believe that evidence should be made accessible to every stakeholder.'
-Emma Klatman ❤️

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG 1/n

@lifeforachild /@ispad_org survey - shifting responsibility:
'Task-shifting & task-sharing: moving a task on from one #HCP to another & where staff from different discipline split the tasks. We are very interested in task-shifting in #T1D'
-Emma Klatman ❤️

ISPAD2022 #dedoc° 2/n

@lifeforachild /@ispad_org survey - shifting responsibility:
'We want to document the level of task-shifting and understand who from the clinical team is doing what. We established en survey in 2021 in many languages.'
-Emma Klatman ❤️

#ISPAD #ISPAD2022 #dedoc° @dedocORG 3/n

Read 8 tweets

Nat’s Pancreas 404 🐝 #COVIDisAirborne

@1derfultype

The tragedy of non-diagnosis of #T1D, results from the #T1Dindex -G. Ogle:

Missed T1D diagnoses are legion 💔

1⃣9⃣8⃣7⃣ Sydney: a 15yo boy passed away because of misdiagnosis as he'd just had chicken pox

#ISPAD #ISPAD2022 #dedoc°voices @lifeforachild @ispad_org 1/n

The tragedy of non-diagnosis of #T1D, results from the #T1Dindex -G. Ogle:

1⃣9⃣9⃣6⃣ Phnom Penh: no child alive with T1D in Cambodia then.
A boy had a late diagnosis, had had a dose on #insulin, but no fluid yet. He passed away 💔

#BG: 105mmol/1890mg

#ISPAD2022 #dedoc° 2/n

The tragedy of non-diagnosis of #T1D, results from the #T1Dindex -G. Ogle:

2⃣0⃣1⃣5⃣ Ghana: an 18yo girl was misdiagnosed with ectopic pregnancy because of acute abdomen, died during theatre where T1D diagnosis was made 💔

#ISPAD2022 #dedoc°voices @lifeforachild @ispad_org 3/n

Read 13 tweets

Nat’s Pancreas 404 🐝 #COVIDisAirborne

@1derfultype

🧵Digital health for improving self-care and mental health in youth with T1D:

Benefits of tech:
▶️ scalable particularly in mental health interventions
▶️ reduce stigma
▶️ accessible 24/7
▶️ taylored tools
-Anna Serlachius

#ISPAD #ISPAD2022 #dedoc°@dedocORG @ispad_org 1/n

Digital health for improving self-care and mental health in youth with #T1D:

Challenges of tech:
▶️ access
▶️ literacy
▶️ security
▶️ clinicians awareness
-Anna Serlachius

#ISPAD #ISPAD2022 #dedoc°voices
#diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n

Digital health for improving self-care and mental health in youth with #T1D:

Challenges of tech:
▶️ engagement matters
▶️ make sure to include users during development
-Anna Serlachius

#ISPAD #ISPAD2022 #dedoc°voices
#diabetesadvocacy #payitforward @dedocORG @ispad_org 3/n

Read 8 tweets

Nat’s Pancreas 404 🐝 #COVIDisAirborne

@1derfultype

🧵 Sleep quality and patterns in children with #T1D:

Sleep deprivation can ⬆️ mental health issues like depression, a greater emotional response & difficulty to control emotions.
-Alice Gregory

#ISPAD #ISPAD2022 #dedoc°voices #patientvoice #payitforward @dedocORG @ispad_org 1/n

Sleep quality and patterns in children with #T1D:

T1D is a 24/7 monitoring. It never stops at night.
Kids w/T1D have shorter sleep patterns and have poorer sleep quality.
-Alice Gregory

#ISPAD #ISPAD2022 #dedoc°voices #patientvoice #payitforward @dedocORG @ispad_org 2/n

Sleep quality and patterns in children with #T1D:

Kids w/T1D have a different sleep architecture with less time in deep sleep whereas sleep is vitally important and particularly for kids w/T1D.
-A. Gregory

#ISPAD #ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n

Read 4 tweets

Nat’s Pancreas 404 🐝 #COVIDisAirborne

@1derfultype

🧵#ISPAD #dedoc° symposium:

Dedoc° started 10y ago on Twitter:
✅ Peer support
✅ Meetings outside of scientific conferences cause #PwD were not allowed in

#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 1/n

#ISPAD #dedoc° symposium:

ISPAD was the 1st scientific conference that organised a Dedoc° symposium in 2021 🙏
-@tadorna

#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 2/n

#ISPAD #dedoc° symposium:

Dedoc° is a platform for others to stand on - to have the #PwD voices heard 🔊
-@tadorna

#ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #diabetesadvocacy #patientvoice #payitforward @dedocORG @ispad_org 3/n

Read 16 tweets

Nat’s Pancreas 404 🐝 #COVIDisAirborne

@1derfultype

🧵#diabetes prevention : are we on the right track?
Here are the players in the development of #T1D 👇
-M. Knip

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #patientvoice #payitforward @dedocORG @ispad_org 1/n

#diabetes prevention : are we on the right track?
The different stages of #betaCells autoimmunity:
1⃣ Normoglycemia
2⃣ Presymptomatic dysglycemia
3⃣ Symptomatic dysglycemia
Primary prevention shld start during pregnancy.
-M. Knip

#ISPAD2022 #dedoc°voices @dedocORG @ispad_org 2/n

#diabetes prevention : are we on the right track?
Early life infection may be the initiator of the endotype. There is a step autoantibodies decline among those diagnosed before 7yo.
-M. Knip

#ISPAD2022 #dedoc°voices #payitforward @dedocORG @ispad_org 3/n

Read 7 tweets

Nat’s Pancreas 404 🐝 #COVIDisAirborne

@1derfultype

Potential role of antiviral treatment in #T1D:

Pathogenesis:
1⃣ Genetic susceptibility
2⃣ Something triggers autoimmunity in the 1st years of life or later
3⃣ #BetaCell destruction
4⃣ Diagnosis
-L. Krogvold

#ISPAD #ISPAD2022 #dedoc°voices #patientvoice @dedocORG @ispad_org 1/n

Potential role of antiviral treatment in #T1D:

'The time trend is the best proof that there are environmental factors triggering T1D.
Heredity as well.'
-L. Krogvold

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs #payitforward @dedocORG @ispad_org 2/n

Potential role of antiviral treatment in #T1D:

'From the 1920s we knew that T1D was of viral origin as deaths from #diabetes in Norway correlated with the mumps pandemic.'
-L. Krogvold

#ISPAD #ISPAD2022 #dedoc°voices #NothingAboutUsWithoutUs @dedocORG @ispad_org 3/n

Read 7 tweets

Discover and read the best of Twitter Threads about #T1d

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Discover and read the best of Twitter Threads about #T1d

Most recents (24)

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