Kasi Grosvenor: Insights on Lipedema Awareness Month Lipedema Awareness Month’s focus on "lipedema literacy"

Lipedema Literacy, Surgery Realities, and Trusted Resources with Kasi GrosvenorHosts Cindy and Kristy welcome back Kasi Grosvenor, a project manager at the Lipedema Foundation, to discuss her lipedema journey, the way pain and functional limitations can be normalized, and how functional capacity evaluations may reveal hidden impacts—especially when conducted by clinicians familiar with lipedema.Kasi shares that she was diagnosed about five years ago (stage 2–3), has used conservative therapies since diagnosis, and has undergone five removal-related procedures (including brachioplasty, abdominoplasty, and low-volume liposuction), emphasizing surgery as a reset—not a cure—requiring ongoing daily management. The conversation covers comorbidities (including mast cell activation syndrome, hereditary alpha-tryptasemia, hypermobility, perimenopause), the slow progress toward ICD coding, and Lipedema Awareness Month’s focus on “lipedema literacy,” urging patients to seek vetted resources like lipedema.org, provider directories, print brochures, and the Legato Library.00:00 Welcome to the Podcast00:55 Sponsor Message01:42 Meet Casey Grosvenor02:34 Kasi’s Diagnosis Story04:35 Normalizing Pain and Limits05:30 Functional Capacity Testing10:12 Finding the Right PT or OT14:43 Life After Five Surgeries17:32 What Areas Were Treated19:08 Regrowth and Fibrosis Tools23:14 Habit Stacking at Home26:08 Comorbidities and Connections30:10 Hypermobility and Early Signs31:34 Aging With EDS Challenges32:43 Grassroots Awareness Materials34:44 Billboards And Viral Moments36:27 ICD Codes And Policy Progress41:58 Patient And Foundation Perspective44:26 Awareness Month Literacy Push47:04 Elevator Pitch For Lipedema49:41 Obesity Bias In Healthcare52:49 Trusted Resources And LegatoFollow us on Social media!!!Kristy's Contact information:IG⁠⁠⁠⁠⁠ ⁠⁠⁠⁠⁠⁠https://www.instagram.com/dellalunawellness/⁠⁠⁠FB Group⁠⁠⁠⁠ ⁠⁠https://www.facebook.com/share/g/1F3pseJKUd/?mibextid=wwXIfr⁠⁠⁠⁠⁠⁠Website  Kristy Dellacroce, MS,OTR/L, MLD-C⁠⁠ ⁠⁠Dellalunawellness.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Lipedema Advocate 856-297-7437Cindy contact information⁠FB:⁠⁠⁠ ⁠https://www.facebook.com/withcindyhowell⁠⁠⁠⁠⁠Private FB Group:⁠⁠⁠⁠⁠ ⁠https://www.facebook.com/groups/7021999704562921⁠⁠⁠⁠⁠⁠IG:⁠⁠⁠⁠⁠ https://www.instagram.com/lipedema_withcindyhowell/⁠⁠⁠Cindy Howell RN, CLT, MPHCWebsite:⁠ ⁠⁠⁠⁠⁠www.withcindyhowell.com⁠⁠⁠⁠⁠⁠Lipedema advocate: 860-550-1161Top 5 Foods to Avoid for Managing Lipedema! Link:⁠⁠⁠ https://withcindyhowell.com/checklist/⁠⁠⁠Free surgery course:⁠⁠ ⁠⁠⁠⁠⁠⁠https://l.bttr.to/6cATB⁠⁠⁠This episode is proudly sponsored by Lipoelastic
CompressionDon’t forget to check out Lipoelastic and use code STLpodcast for 10% off your next order.⁠⁠https://www.instagram.com/lipoelastic_usa/⁠⁠⁠⁠https://www.instagram.com/lipoelastic/⁠⁠Lipedema Foundation Website: https://www.lipedema.orgAccess Lipedema Awareness Month Resources: https://www.lipedema.org/lipedema-awareness-month-2026Join the Lipedema Foundation Newsletter: https://lipedema.org/contact-us Educational Resources: https://www.lipedema.org/educational-resourcesFollow Lipedema Foundation on Social Media:  Facebook, LinkedIn, Instagram, X, TikTok, and YouTubeExplore the Lipedema Research Library (LEGATO): https://www.lipedema.org/libraryAccess Treatments Resources: https://www.lipedema.org/treatmentsFind a Lipedema Provider: https://www.lipedema.org/provider-directory Kasi Grosvenorhttps://www.instagram.com/kasi.grosvenor/