After years of extreme pain in both her legs, Trevorton’s Faith Leiser was referred to a Geisinger vascular surgeon to find the cause of extreme swelling in her lower extremities.
“They checked my veins and everything checked out OK — then the doctor handed me a packet of papers he printed off the internet and told me that was what I had,” she said. “He said it was lipedema, and there was no known cure or treatment.
“It was great to finally have a reason behind this pain and the swelling, but also very disheartening to not really have a way out. I was told to wear compression stockings and to go to physical therapy when the pain was too bad.”
Marcy Stump, of Shamokin, can empathize about the pain — something she has been dealing with getting progressively worse after each pregnancy and especially now as she goes through menopause.
“The research shows that lipedema is triggered and intensified by hormone changes in the body,” she said, adding that a recent hike was yet another reminder of the hampering effects of lipedema.
“There were steps and the hike wasn’t flat and it got pretty difficult. You want to be up there with the rest of the group, but the pain really slows you down. When I got home that evening, I needed to apply heat and ice.”
According to the National Lipedema Foundation, headquartered in Greenwich, Connecticut, the condition is a chronic medical issue characterized by a symmetric buildup of adipose tissue (fat) in the legs and arms. A common but under recognized disorder, lipedema may cause pain, swelling and easy bruising. It may be accompanied by an unusual texture within the fat that can feel like rice, peas or walnuts beneath the surface of the skin.
“The Mayo Clinic was researching lipedema back in the 1940s, and yet there is still very limited public awareness of it,” said Stump. “Yet, statistics show that as many as one in 11 women can have it. Research also indicates that it is a genetic condition — that parents can pass it along to their daughters. I come from a large family, and when I am at reunions, I can definitely see it in a lot of the women.”
For Leiser, the pain got so extremely by 2015, that she sought out help via a specialist in New York that used water-assisted liposuction he learned from studying in Germany.
“The procedure involves breaking apart the clusters of diseased cells with water and then sucking it all out,” she said. “The doctor estimated it was a 10-year solution that may need to be revisited if pain intensifies again. For me, the procedure significantly reduced the pain.”
Due to lack of awareness, Leiser added, insurance companies don’t cover treatments such as the water-assisted liposuction.
“I had to pay for it all out of pocket,” she said. “Even though it is a form of liposuction, it isn’t a cosmetic surgery. It is a way to reduce what had become an extreme, unbearable level of pain.”
Body image impact
Another misconception associated with lipedema, according to Leiser, involves body image.
“People look at me and assume I am lazy and fat. Once they get to know me, they realize I am very healthy,” she said. “I wish, as a society, we didn’t judge so quickly. You see someone walking around who is overweight, it may not be their choice — there may be a legitimate disease behind it.”
Leiser loves to go on walks in the valley region she calls home, but walking up the steep inclines can really impact her.
“If I walk it later in the day, I can barely move by the time I get home,” she said. “I get sharp, stabbing pain into my legs, from the ankles up. I also get really sensitive to touch — if something just brushes my legs, it can really hurt.”
According to Leiser, there is no blood test that can lead to a diagnosis of lipedema.
“Diagnosis comes down to symptoms and appearance,” she said. “And it can lead to immobility if you don’t keep pushing yourself to move.”
Because of that — and its potential ties to heredity — Leiser continues to keep as active as she possibly can.
“I have two daughters, and I’ve learned to be really cautious in how I let lipedema impact my life because I don’t want them thinking it can ruin their lives down the road if they develop it,” she said.
Stump has been tweaking her diet as a way to combat the condition.
“You really have to listen to your body — for me, I’ve been trying to eat more plant-based foods and avoiding things that can be inflammatory, have added sugars or hormones,” she said.
Increasing lipedema awareness is critical, according to Leiser, for treatment options and insurance coverage to evolve.
“I tried to reach out to Geisinger, and encouraged them to look into the condition. I haven’t heard anything back,” she said. “However, the disease is definitely out there, and it is really impacting many women who may not otherwise understand it.”