I don’t mean to offend you, but I’ve noticed your legs in a video online and I think you have a medical condition called lipedema. Just thought you should know.
When I first read her message in my ‘others’ inbox on Facebook, I laughed out loud.
Earlier that week I’d interviewed a celebrity for a Facebook live video, it was probably the height of my young career thus far. But the camera angle wasn’t the most flattering and I’d worn a short dress that day.
“You know you’ve made it when strangers online start sending you messages,” I joked to my partner – it was late at night and we were laying next to each other in bed.
But then I Googled it. And it wasn’t funny anymore.
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As a lipoedema sufferer, I can honestly tell you I wish I knew sooner. Years of not knowing why I couldn’t loose and tone my legs drove me crazy. I even tried starving myself. My legs and arms grew and caused me to be bullied in my workplace because “I gave off the image of a lazy slob.” Yes my manager took me aside and said off the record he knew I was working hard but my personal image was off putting to others. I’m always well dressed...ask anyone, it was completely my size he was speaking of.
When I was finally diagnosed it was a huge relief to know it wasn’t something I had done or could control, but then the fear of not being able to control it set in. Was this my life? I set about getting informed about my options, I talked to specialists, joined support groups and read everything I could. I was in early menopause by now and my symptoms were going nuts. I had pain was loosing my mobility and was suffering other stresses on my body from the weight, but not the health types (no heart disease or diabetes etc). Thing is if I’d have only known what was wrong when I was younger/stage 1 or 2, I could have had treatment and begun wearing support clothing to help stop it progressing to this. If you don’t treat lipoedema it will eventually take your mobility. Trust me I’m living proof!!
In 5 weeks I’m going to have some super dangerous surgery to try and help me. It’s my last opportunity to try and turn back the clock on what damage has been caused. If it works it’ll be the first of a number of for me. It’s expensive, medicals don’t cover lipoedema, I want to be able to dance at my daughters wedding one day (she’s 21) and I’m only 46 so my life is not ready to be dormant.
Be glad you know and go find a good specialist (I recommend Dr Helen Mackie at Macquarie medical). Who will help you now and not say, they don’t worry me. Just because they aren’t too bad now, doesn’t stop the problem of progression. Most GPs don’t have the knowledge to know this. Please please look for more i
I have something very similar called Lymphoedema. Instead of fat it’s lymph fluid that builds up in my leg. And I think if you hadn’t known about it, it could have gotten worse. At least now, while I haven’t seen you, I’m guessing it’s not too bad, it could get worse and harder to treat. I recommend getting a second opinion. Look into treatment. The medical world is forever changing and you never know when some new treatment might pop it’s head up.