So, this is a big reveal moment for me. I've been hesitant to do so until now, for obvious reasons. I'm posting a photo of how my legs looked BEFORE I began therapy for Lipedema last year, in addition to a pic I took today of how my lower legs look after I've worn compression garments. Both of my lower legs are affected, with the right leg *always* worse than the left for some reason.
Things to remember:
* This is a rare, genetic disease; it is not curable at this time. You can only manage it with therapy and compression garments to keep it from becoming worse.
* This is NOT the same as regular edema.
* This has nothing to do with weight; you can be a size 0 and still have Lipedema. Your legs will look like this, although your body will remain smaller above the waist.
* You cannot get rid of Lipedema by dieting, exercising, or taking medicine (because there is NO cure at this time).
* It's also characterized by bruising and pain/pressure in the affected limb.
* Lipedema was discovered 75 years ago, in 1940.
* 1 in 10 women have Lipedema. Most don't know they have it.
* I'm at Stage 2. The stages go from Stage 1 to Stage 4 -- the latter is where you don't want to be!
* In severe cases, patients lose mobility or may need to have their limbs amputated.
Today's pic of one of my legs. If I don't put my compression garments on, my legs will begin to fill with lymph fluid and will once again resemble the 1st pic.
I was referred to Penrose Hospital Rehab last year. My physical therapist, Lil, has 20+ years of experience treating those who suffer from Lipedema and Lymphedema. I have been wearing compression garments (from the knee down on both legs) and have gone through Manual Lymph Drainage (MLD) therapy. It's made a difference (see photo at right). Now, once I take off my compression stockings, my legs will begin to fill with lymph fluid again and will look more like the pic on the left.
On a good day when I wake up, my lower legs look about half this size. Some days they look almost normal, save for the band of separation between the calves and my ankles/feet (you can see this band, or shelf, in particular in the right-hand pic). That's one symptom of Lipedema that separates it from Lymphedema, as well as a negative Stemmer's sign.
Since 2011, I've lost 73 pounds using the Weight Watchers points system. I did it to gain energy and feel better -- my husband loves me regardless of how much I may or may not weigh. I did it for me so that I could accomplish more. Even after losing so much weight, my Lipedema is unchanged. It's just as bad as it was before -- that's because DIET AND EXERCISE will not cure this genetic condition. This is not obesity, this affects skinny women, too. It's suspected that it may be an inflammatory disease connected to a hormone disorder, but medical researchers aren't completely sure of what truly causes Lipedema.
If you are unlucky enough to have Lipedema (and secondary Lymphedema, as I have), you're stuck with it, and that totally sucks. It messes with my head and my self-esteem. I will never wear dresses or shorts again. The embarrassment and humiliation I feel is often overwhelming.
But this is the hand I've been dealt, and I'll use it to raise awareness and educate people about this relatively unknown condition. I'm still Bev, I'm still the same me I've ever been, and this is yet another challenge I'll face. Judge me by who I am inside, not by how my Lipedematous legs may look. I'll be okay; it's the women who have Lipedema who don't know they have it or know what it is that concerns me most.
Some women can have Lymph-Sparing Water Assisted Liposuction (WAL) in Europe and parts of the US. The procedure removes the diseased tissue from the legs. Unfortunately, many insurance companies will not cover WAL because they classify it as cosmetic surgery, rather than surgery that will help a person become immobile or possibly face amputation as the disease worsens. As we all know, if insurance companies can avoid paying for surgeries, they will.