Life & Breath Foundation · Sarcoidosis Speaker Series

Using AI to Support Your Sarcoidosis Journey

Dr. Irina Koyfman, DNP, NP-C, RN

How people living with sarcoidosis, and those who care for them, can use AI tools to understand their results, track their medications, prepare for appointments and advocate for their care, safely.

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18
Slides
10
Audience questions answered
3
Privacy rules
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Four habits to take home

01

Introduce yourself

Tell AI who you are, what you live with and how you want answers. Slide 7

02

Build your project

Keep one My Sarcoidosis folder with your results, medications and visit notes. Slide 7

03

Protect your privacy

Turn off data sharing and remove names, birth dates and ID numbers. Slide 8

04

Verify before you act

The higher the stakes, the more you check with your doctor or pharmacist. Slide 15

The deck

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Why it matters

SLIDE 01

Using AI to Support Your Sarcoidosis Journey

Who I am, and what tonight is really about: more time, clarity and confidence in your care.
SLIDE 02

You are the coordinator of your own care

The numbers behind all those visits, specialists and prescriptions.
SLIDE 03

How much should you trust AI?

Blind reliance, blind rejection, and the calibrated trust in between.
SLIDE 04

Same tool, two very different outcomes

A rare diagnosis found and a hospital stay caused, by the same kind of tool.
SLIDE 05

A brilliant librarian, not your doctor

Confident is not the same as correct.

Getting set up

SLIDE 06

Start free, and try at least two

ChatGPT, Claude, Gemini, Copilot and Perplexity, compared.
SLIDE 07

Introduce yourself, then build your folder

Set up a My Sarcoidosis project so AI already knows your story.
SLIDE 08

Three rules to protect your privacy

Turn off data sharing, remove identifying details, verify before you act.
SLIDE 09

Better questions get better answers

The RTF and CLEAR frameworks, and the one sentence to always add.

Using AI in your care

SLIDE 10

Understand your results in plain language

AI translates. Your doctor interprets.
SLIDE 11

Get smarter about your medications

One master list, side effects to watch, and one sentence for every visit.
SLIDE 12

Get more from every visit

Describe symptoms with OLD CARTS, and three questions before you leave.
SLIDE 13

Big decisions and second opinions

The Choosing Wisely questions, and how to find a sarcoidosis specialist.
SLIDE 14

Lighten the invisible load

Energy, paperwork, hard conversations and 3 a.m. thoughts.

Staying safe, and what to take home

SLIDE 15

Match your checking to the risk

Low, moderate and high risk, and why vitamin D is a sarcoidosis trap.
SLIDE 16

How do I know if an answer is accurate?

Ask for sources, click the links yourself, and push back.
SLIDE 17

Rare disease and red flags

When to stop and call your doctor instead of asking AI.
SLIDE 18

Trust is not the absence of questions

Four habits to take home, plus books and free prompts.

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