THIS IS MY
LIPEDEMA
STORY
The tender lobules, lumps, and folds that I resented for hanging in ways that made me feel like I didn’t look like a “real woman,” distorting my perception of my own femininity has a name.
It’s called Lipedema.
A little known fat disorder
1 IN 9 WOMEN ...
Lipedema is a painful, genetic, and progressive connective tissue disorder that damages the lymphatic system, leading to chronic inflammation and a buildup of non-metabolic tissue that resembles scar tissue more than fat. This condition alters the shape and size of the body, leading to mobility issues and an increased risk of sepsis.
Although Lipedema affects 1 in 9 women and people assigned female at birth, it remains largely unrecognized by both doctors and patients, resulting in widespread misdiagnosis. I wasn’t diagnosed until I was 38 years old, despite having symptoms as early as age 11. I am one of the more fortunate who was diagnosed earlier than most.
A little known fat disorder
a genetic progressive connective tissue disorder that breaks the housing of the lymphatic system causing chronic inflammation and fibrotic fat that responds differently to caloric deficit.
After a year-long battle to obtain a proper diagnosis, I discovered a passion for sharing my story. Given the prevalence of Lipedema, it’s clear that many others have this disorder but are unaware of its existence, and many doctors still lack the training and education needed to identify it in patients.
Through sharing my Lipedema journey on social media, I have reached over 10 million people. Many have reached out to tell me they were able to use my video to help their doctors recognize and diagnose their condition, while others are now questioning if the symptoms they’ve experienced could be Lipedema. Patient storytelling has proven to be one of the most effective ways to educate others on what might be affecting their own health.
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I found the passion to tell my story because of how long it took me to be diagnosed and what that time personally costed me. Lipedema rates affirm that many more people out there have this disorder but do not know and are paying the same price. I believe in the power of patient-led advocacy communities.
queerly its lipedema
I speak and advocvate from an intersectional, queer, and trans-inclusive perspective.
rightnowish
As a speaker and lipedema awareness advocate, I use storytelling to raise awarenesee and empower.
media
MEDIA
fat cis black queer woman disabled american Intersectional STORYTELLER
Despite the lack of representation, immigrant, Black, Asian, Latinx, white women, trans men, non-binary people, and those assigned female at birth have lipedema. Most are undiagnosed.
Coined by Kimberlé Crenshaw in 1989, intersectionality highlights how race, class, gender, sexuality, and other identity markers intersect to shape experiences, including their medical experiences. Everyone is intersectional.
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