Join my chat
A private space for us to converse and connect
Today I’m announcing a brand new addition to my Substack publication: the Lipedema and Me subscriber chat.
This is a conversation space in the Substack app that I set up exclusively for my subscribers — kind of like a group chat or live hangout. I’ll post short prompts, thoughts, and updates that come my way, and you can jump into the discussion.
To join our chat, you’ll need to download the Substack app, now available for both iOS and Android. Chats are sent via the app, not email, so turn on push notifications so you don’t miss conversation as it happens.
How to get started
Download the app by clicking this link or the button below. Substack Chat is now available on both iOS and Android.
Open the app and tap the Chat icon. It looks like two bubbles in the bottom bar, and you’ll see a row for my chat inside.
That’s it! Jump into my thread to say hi, and if you have any issues, check out Substack’s FAQ.
Hi ladies,
The first time I ever heard of this disease was just about a year ago. When I saw photos online and read more my mind was blown, because my legs look just like most cases in the stage 2 range. I inherited my legs from my mom who is part German and read that if you have German ancestry that there’s a big link between that and lipedema.. I have not had an official diagnosis yet, (I’m 54yo) because I can’t seem to find a doctor who can, however there is a plastic surgeon in my area about an hour’s drive from me who charges a substantial fee to do it, but I’m not entirely sure I want to have surgery by him necessarily.
I did however find a Physical Therapist who specializes in lymphedema as well as lipedema, and is very knowledgeable on the subject, she has been my saving grace so far. I see her every 2-3 weeks for MLD, she says my legs look consistent with having lipedema. She also measures my legs each time, and suggested I get a vibration plate to use everyday, as well as Bioflect leggings, and do dry brushing .. it all has been helping but only when I’m really consistent with it. She’s not an in-network provider so I pay out of pocket until I reach my deductible... Anyway I live in NJ, I have Empire BCBS insurance through my husband’s job. Any suggestions or doctor recommendations would be so appreciated.
I am also a 500hr CYT (certified yoga teacher) and am learning more about MLD, would love to incorporate both into a class just for lipedema patients. Something my PT and I have been talking about. I also never realized until recently that in many cases lipedema patients are also hypermobile (which I am and not because of yoga).
Look forward to chatting with you all more and thank you 🙏 for sharing and helping all your experiences and knowledge on the subject we are so in need of!
Hello! I found this group on TikTok while researching Lipedema. I’m 32 from Dallas, Texas. I’ve been struggling with lipedema for years and it’s been really hard for me. I feel so embarrassed about my legs I don’t wear shorts or dresses. In the Texas hear, it’s brutal. I’ve gone to several plastic surgeons in Dallas all all have given me the same quote around $20,000! How can I get this approved by my insurance? I currently have BCBS OF Texas, PPO. Help!