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Welcome to!

My blog finally has its own domain! I’m going to be redesigning and improving things around here as I go, so feel free to make suggestions.


  1. Lulu

    Hi, I’m just commenting because i’ve just been diagnosed with lipedemia, literally yesterday. And I couldn’t find any way to get in touch other than commenting. I just kind of wanted to talk to you because, although I know I’m lucky to have been diagnosed at only 18 (my mum’s less lucky; found out at the same time as me, she’s 46), I just have no idea what treatment is like or anything, or what’s so bad about liposuction or whatever. So slightly panicky. Sorry if you’ve spoken about this in detail in your blog before, just got to admit I’ve only just found it, and haven’t read anything yet. Feel free to email me, Lulu

    Posted on 30-May-11 at 11:21 am | Permalink
  2. Sara N.

    I wanted to share with you guys this new site….. (http://curelipedema NULL.blogspot Dr. Herbst is working on this site. I have fibromyalgia and lipedema. It totally stinks!!

    Posted on 31-May-11 at 12:13 am | Permalink
  3. kathy vaughan

    just found your blog Jane and am so glad. My poor sister has horrible lipedema and has been alone for so long suffering with it. I knew there had to be a place we could find help and camraderie and then we found you and the other lipedema sites. Thank for your sharing and we both hope to keep up with your journey. Bless you and all yu stnad for. My sister is at a clinic in NC right now trying to get mobile enough to fight her lipedema. Kathy

    Posted on 30-Jun-11 at 10:04 pm | Permalink
  4. Jan

    hi , just found out by accident today that there is a NAME for my legs, which, like you, I have had since about age 11 ( i am now 55), As a nurse, I have cared for clients with lymphoedema, but never knew there was Lipoedema. Living with these embarrassing “tree stump” legs (*as my ex used to refer to them) and having to hide them/avoid beaches/pools etc, I have always longed to be able to wear shorts & dress like “normal” women, Now that i am aware of what it is I cqn do some research on treatments etc. First step will be to have it correctly diagnosed. Please feel free to email me.

    Posted on 05-Jul-11 at 11:41 am | Permalink
  5. Cynthia Mora

    Please help!!! need compression pants in 55in waist…my lipedema is in right hip and upper right leg and am unable to find what I need in very large size….thank you so much!!

    Posted on 10-Oct-11 at 6:53 pm | Permalink
  6. Jane

    Cynthia, do you have a therapist for MLD (lymphatic drainage)? This would be the best place to start — not only can such a therapist help you find the stockings you need, he or she can also work with you to reduce the size of your legs. If you don’t have any such resources in your area, check with the orthopedic/prosthetic businesses in your area — the folks who would sell you a leg brace or a wheelchair. They specialize in “durable medical equipment” which can include being a retailer for custom compression stockings.

    Posted on 10-Oct-11 at 10:27 pm | Permalink