In this episode, we share our experiences finding healthcare providers to diagnose and treat lipedema. We talk about what we've learned along the way and what types of care have helped us most. We also highlight the differences between lipedema doctors based on their area of specialization.
This episode includes frank discussion of weight bias and fatphobia in healthcare settings, and we explore how body size and weight changes have impacted our access to lipedema care. We discuss intentional weight loss, "weight management" as healthcare, weight measurements in pounds, and there's a brief mention of GLP-1 medications.
Show notes:
We discuss weight measurements in detail from 1:04:30 to 1:30:35.
Functional somatic symptoms/syndrome https://bpsmedicine.biomedcentral.com/counter/pdf/10.1186/s13030-017-0119-3.pdf
Making a Definitive Diagnosis of Lipedema: https://consultqd.clevelandclinic.org/making-a-definitive-diagnosis-of-lipedema
A vascular lipedema specialist tested MP for acrocyanosis by having them hold their arm over their head for an extended period of time. We’ve been unable to find a specific name for this test. It’s noted in MP’s medical record as “with provocative maneuver.”
https://my.clevelandclinic.org/health/diseases/acrocyanosis
ICD codes: https://www.lipedema.org/icd-codes#:~:text=The%2011th%20revision%20
More on ICD codes: https://www.instagram.com/p/C_vZDzNuJxV/?igsh=MXQxcmN5OG04Y3BtNA==
Standard of care for lipedema in the United States https://pmc.ncbi.nlm.nih.gov/articles/PMC8652358/
Fat and Fertile by Nicola Salmon
https://nicolasalmon.co.uk/fat-and-fertile-book/
Ragen Chastain
https://danceswithfat.org/2015/05/20/fat-people-and-our-knees/
MP’s tips for navigating difficult medical encounters
https://www.instagram.com/reel/CpOrgcvDXqW/?utm_source=ig_web_copy_link&igsh=MzRlODBiNWFlZA==
A grant from the Awesome Foundation disability chapter provided start up funds for this podcast. https://www.awesomefoundation.org/en