ROYAL OAK, Mich. — Alisa Vandercruyssen previously thought she was merely “curvy.” However, after watching a series of YouTube videos, she realized she might be suffering from a rare condition. This discovery led her to have more than 6.5 liters of nodule fluid drained from her legs.
The 28-year-old woman began noticing an increase in the size of her legs, arms, and abdomen at the age of 17, despite maintaining an active lifestyle. Despite several visits to doctors, her condition was misdiagnosed as a weight issue, and she was routinely given pamphlets suggesting dietary adjustments and exercise routines.
Regardless of her healthy diet, regular exercise regimen, and even the use of weight loss drugs, Alisa’s limbs continued to grow and started causing her considerable pain. She believes her condition may have contributed to her gaining approximately 50 pounds of additional weight.
After viewing a YouTube video about lipedema – a chronic condition characterized by an abnormal buildup of fat – Alisa suspected she might be suffering from the same thing. She received her official diagnosis of lipedema in November 2022. Doctors informed Alisa that she would need six surgeries to remove the lipedema nodules. So far, she has undergone one of these procedures.
“I’d always been active and pretty trim and then without any lifestyle changes I started to get bigger and bigger,” says Alisa, an aesthetician from Royal Oak, Michigan, in an online video.
“Then I was on Ozempic, the highest dose, for six months and I did not lose weight. It looks just like fat so you get diagnosed with obesity all the time. I came across it on YouTube and brought it up to the doctor after watching a vlog about it. I questioned why I was relating to everything she was saying. I realized I had to have six to seven surgeries and I’ve had one so far where they removed 6.5 liters of nodules from my upper thighs. It’s already made a difference in my energy, and I feel better whilst I’m healing post op, it’s crazy how much it affects your life.”
Prior to her diagnosis, Alisa’s unknown condition left her in constant pain. She struggled with everyday activities, such as going to work and says she felt like she was “in a suit.”
“Before the diagnosis I thought I just had thicker legs and cellulite,” the 28-year-old adds. “But it feels lumpy as it’s nodules forming. It’s like tumors forming under your skin. All the places that were fatty felt like that. It’s harmful as it’s a progressive disease. It’s constantly growing. Even normal everyday things are painful to do as you’re sitting on the nodules. It was a lot of pressure on my knees – I had so much bulk.”
Alisa maintained a healthy lifestyle and started to embrace her looks after seeing no changes before being diagnosed.
“I was constantly cutting. I had a personal trainer and I looked at my before pictures and then looked at myself after six months and I looked worse. I had a strict diet too and I still couldn’t get a hold on this. I was trying to cook lots of things. Lots of veggies, more protein than anything. I had a low carb diet, went to weight watchers, and a crazy diet from my personal trainer,” Alisa explains in her video.
“I started to embrace it and thought ‘I guess I’m this curvy girl, that’s how I am going to be.’ It was a huge relief when I was diagnosed but at the same time it was sad as I just thought I could have had way more fun as I was way too focused on looks.”
After her diagnosis, Alisa decided to have the lipedema nodules removed and travelled out of state to a specialized center, the Lipedema Surgery Center in Roswell, Georgia, for the surgery. Alisa had to pay $8,000 for her first surgery, but the rest of her operations are reportedly covered by insurance.
“I was told I could be referred to a plastic surgeon and the only option of getting rid of it is through surgery,” Vandercruyssen continues.
“It’s called water assisted lipo-suction. They take a water hose and break down the nodules and then suck it out. It sits directly under the skin and it’s very easy to get to. They don’t have to go very deep and it took two to three hours. They took out 6.5 liters out of just my front upper thighs.”
Alisa says she feels “relieved” after her first round of her surgery.
“I’m trying to focus more on how I feel than how I look. It will be nice to have an easier time finding my size in stores but feel more energy and walk without pain! I’m excited to see the muscle I’ve built working out all these years.”
Alisa will be returning to the surgery center to have the rest of the lipedema nodules removed.
“I know how sad and lonely it was to be in my body. But other people don’t know that they’re doing everything they can and it’s not their fault at all. It’s very underdiagnosed and under researched.”
What exactly is lipedema?
Lipedema is a chronic disorder characterized by a symmetrical buildup of adipose tissue (fat) in the legs and sometimes the arms. It’s a condition that primarily affects women and is often misdiagnosed as obesity or lymphedema.
While the causes of lipedema aren’t completely understood, it’s thought to be associated with hormonal influences and it often runs in families, suggesting a genetic component. It typically starts or worsens at times of hormonal change, such as puberty, pregnancy, or menopause.
Despite efforts with diet and exercise, the fat deposits associated with lipedema are resistant to weight loss. In addition to the abnormal accumulation of fat, people with lipedema often experience discomfort, tenderness, and easy bruising in the affected areas. The condition can also lead to mobility problems as well as psychological issues related to body image.
In the later stages of the disease, lipedema can cause a fluid buildup that leads to lymphedema, a condition known as lipo-lymphedema.
Treatment for lipedema can include lifestyle modifications, physical therapy, compression garments, and in some cases, surgical procedures such as liposuction to remove the abnormal fat deposits. There is no known cure for lipedema, but treatments can help manage the symptoms and prevent progression of the disorder.
South West News Service writer Jake Meeus-Jones contributed to this report.