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The Forces Blocking Recognition
Five forces are actively suppressing lipedema recognition
These are not failures of information. They are failures of perception. Perception operates by rules that can be understood and interrupted.
When all five forces are operating simultaneously, the formal healthcare system closes every door. Women find lipedema on Instagram because the formal system failed to reach them first. The question is not whether Instagram is an appropriate diagnostic tool. It is why the formal system got there last.
The Pre-Diagnosis Injury
What Connective Truth Does
Every organization in the lipedema space serves people who already found the word- and we know just how critically important that work is.
Connective Truth works alongside these efforts, to address the barriers before the word exists: in schools, community health clinics, and the systems that reach young girls before they ever see a specialist.
We see awareness as a burden on the individual to find the information- whereas access puts the burden on the system to deliver it. Lipedema advocacy has spent years on the first. Connective Truth is building the second.
Listen to Our Summit Talk
Connective Truth: Rewriting the Path to Lipedema Diagnosis and Discovery
A Talk by Erika Schlick and Wendy Moore
Summit Contests & Freebies
Corrective Truth Contest
A cash prize contest to disrupt misinformation
Correct Four Contest
A cash prize contest to discover direct biases
Sticker Pack Freebies
Sign up for our mailing list and get stickers from us!
Who We're Trying to Reach
The primary population Connective Truth is built for: young women - in particular, underserved teen girls in Title 1 schools- where the pre-diagnosis injury begins earliest and the silencers go most unchallenged, and where access to the formal healthcare system is least reliable.
These are not young women who will find lipedema through a specialist referral. Many will not have access to a specialist at all. The multi-node design of Connective Truth is redundancy by necessity: when the healthcare system cannot be counted on to deliver recognition, recognition has to be delivered through enough alternative channels that the system's failure becomes irrelevant.
Six Ways We're Doing It
Truth Seek
We pay school nurses, counselors, and coaches for their time. We sit down with them, and co-build tools based on what they report seeing in students. The payment matters. It signals that their knowledge has professional value and that this is a real exchange, not a volunteer ask. The data exists in school settings, and nobody has asked for it yet.
Ground Truth
We fund research in schools, K-12 and beyond, with students as citizen scientists and schools as data collection points. We think awareness can and should start in childhood to support young girls and the peers around them in their daily lives. The data on young girls and lipedema does not exist. We are building it from the ground up, in the communities where it is most needed.
Connective Youth
A physical lipedema toolkit built for and delivered directly to non-clinicians: teachers, counselors, coaches, and community health workers. The people who see young girls every day, before those girls have ever heard the word lipedema.
Corrective Truth
Direct bias correction materials, including a BMI explainer card, designed to interrupt the clinical and cultural narratives that suppress recognition at the point of care.
You Can Handle the Truth
Open letters putting industries on notice for their documented role in suppressing lipedema recognition.
Speak Truth to Power
Seven pre-written advocacy letters that anyone can send. You do not need a diagnosis to use them.
