Raising Lipedema Awareness | Strategies for Reaching Fellow Patients, Doctors, and More

[@sallyb8572]

I recently discovered Lipedema on the internet. I am almost 66 years old and have 6 sisters who did not have Lipodema and I am pretty sure I do. I was always told I had the same large legs and arms like an aunt of my mother’s. I knew when I was in my early 20’s and lost 80 pounds and yet my legs and arms still were large something was wrong. Always told to lose weight. After having my son at age 25 my legs and arms seemed to get much larger. I always did not enjoy walking due to the heaviness and pain. I have been on a diet most of my life only to be able to maintain my 5’2” 225 pound stature. Depressing to know I have been fighting this battle all my life to now discover it was not my fault. It has caused me a lot of depression through the years. My weight goes from 235 to 225 and won’t budge below that no matter how had I try. Please keep sharing to get more knowledge out there to hopefully save some young people from the pain and humiliation I have gone through over the years.

[@sturdywoman]

@sallyb8572 thanks for sharing your story! I think a lot of people here share similar experiences. The good news is you've found your people now and there is a lot you can do to get some relief from symptoms. Sending big hugs

[@universaltruth2025]

Hugs. I’m 52 & got the same ‘she has legs like an Aunt of So-and-so’. I think my grandmother told my mother that. In actual fact I clearly got it from my mother (and her mother), judging by my mother’s legs and body and how the lipedema has worsened over time. It must have been hard being the only one out of all your sisters with the condition. I had one brother who was v tall, full of energy and who especially despised fat girls who he considered greedy and lazy. I wasn’t ever fat looking back but never looked lean either but I did feel his contempt constantly.

[@Lynnz-555]

I have only realised my condition having found your site by accident. I suddenly thought "wow! that's me!" It explained the insensitive comments made by men including my ex husband, resulting in an increase in my depression and reduction of self esteem. But now I know that I got it from my mum. I'd always thought I had my mums legs, the "lucky" one out of 4 daughters. But is also a relief to finally know the truth! I'm so glad I found your posts and wish all women here the very best.

[@EvilFleesBeforeMe]

awww sending you hugs

[@helenguilford3136]

I ordered the brochures and the clinician’s guide. I’m giving them out a little at a time.

[@sturdywoman]

@helenguilford3136 may they find those who need them most. All we can do is plant a million seeds and pray some take root

[@hellojnet]

Thank you for this useful & resourceful video ! I’m newly diagnosed & this video hugged me, warmly.

[@jenaldoshishah8755]

Hey, thanx a ton for your videos, its thru you that i got better understanding of my body.. n after series of breaking my head with my GP, radiologist and plastic surgeons I underwent a surgery for it. But i now I want more understanding of eating habits n lifestyle changes. I m a vegetarian no eggs diet so keto looks challenging

[@sturdywoman]

@jenaldoshishah8755 thanks for watching! You'll find a lot of tips about conservative treatments in my playlist here kzbin.info/aero/PLGrmXtIzhSGJ8yMVrvzsS0IlDdZisLuKS If you aren't in compression yet that is often a good place to start as it can provide almost instant relief. Sending big hugs

[@simmiedavissimmiesings8185]

Im excited to soon receive the brochures I ordered. I have approached a couple ladies and both were open. Only 1 had experience with the term

[@sturdywoman]

@simmiedavissimmiesings88185 thanks for sharing your experience! It's great to hear the women you approached were open to learning about lipedema. Your bravery to talk about it likely helped them a lot!

[@MoreThanMyWeight]

Hi! I just made my first video about lipedema! So nice to find you!!

[@sturdywoman]

@MoreThanMyWeight BRAVO! Love your channel name

[@lanaloyd3160]

Great update. Thanks so much

[@sturdywoman]

@lanaloyd3160 thanks for watching!

[@KaylynPNW]

I’ve had to explain lipoedema to nearly every medical professional I’ve seen. None have heard of it. After explaining, one actually said “oh, fat is fat”. {{sigh}} I’ll be ordering pamphlets!

[@sturdywoman]

@Kaylyn628 it's so frustrating isn't it! Often even the ones who have heard of it have also heard the common misconception that there is nothing you can do to manage it. Ugh. Make sure you get some of the clinician's guides too! They include the diagnostic codes and a QR code linked to the US Standard of Care for Lipedema

[@vickispringer4050]

I have gone through the same thing and they just shrug it off as lymphedema! It's so frustrating!

[@KaylynPNW]

A couple times I’ve said “lipoedema” and the medical professional has said “you mean LYMPHedema?” 🙄 “Uh, no. Lipoedema.” @@vickispringer4050

[@alanaa6018]

Thanks!

[@vollieball68]

I would love to have one.

[@marthastettinius1780]

very helpful, thank you. It's 1 in 11, not 11%, though.

[@sturdywoman]

@marthastettinius1780 see here for the 11% figure www.ncbi.nlm.nih.gov/pmc/articles/PMC5055019/ I think there are a lot of different numbers flying around, but we can all probably agree they are all on the low end of estimating!

[@reginathomas3856]

I don't see the link

[@sturdywoman]

@reginathomas3856 they are all in the description below the video. You should see a box right below with "more" at the end of the text. Click that and it should open everything

[@EvilFleesBeforeMe]

[@vollieball68]

It is had to walk with one on your left leg for a men.