A Michigan woman who assumed she was “curvy” discovered that the extra weight was due to a rare condition that was cured only by draining 1.7 liters of fluid from her legs.
Alisa Vandercruyssen, 28, started getting bigger legs, arms and stomach at age 17 – despite an active lifestyle – and sought help from doctors who said she had a weight problem – they even gave her pamphlets on diet and exercise.
With nowhere else to go, Vandercruyssen sought help on YouTube and discovered that the inability to lose weight was due to lipedema.
Lipedema is a chronic condition of fat and connective tissue that builds up in your legs, hips, buttocks, and sometimes arms.
Vandercruyssen, an esthetician from Royal Oak, Michigan, is now undergoing surgery to remove the lipedema nodules and already feels “relieved.”
Mrs. Vandercruyssen had to pay $8,000 for her first surgery, but the rest of her surgeries are covered by insurance
Mrs. Vandercruyssen decided to have the lipedema nodules removed and traveled abroad for the operation to a specialized center, Lipedema Surgery Center, Roswell, Georgia.
Mrs Vandercruyssen said: ‘Before the diagnosis I thought I just had thicker legs and cellulite.
“It was a lot of pressure on my knees — I had so much mass.
“I started embracing it and thought, ‘I guess I’m this curvy girl; so shall I be.”
Lipedema is a condition that affects only women, about one in nine, and usually begins during puberty, pregnancy, or menopause. The exact cause is unknown.
It causes fat under the skin’s surface to grow larger than normal, especially in the lower part of your body.
Aaron Mason, MD, FACS, FAAP, an aesthetic and reconstructive surgeon at Banner-University Medicine North, said in a blog post: ‘It can give the impression that two different bodies have been put together.
“You have a typical upper body and arms, but a lower body that is larger in proportion.”
And this seems to be what Mrs Vandercruyssen had suffered.
She believes the condition has caused her to gain about 8 pounds since she was about 17 years old.
Despite a healthy diet, exercise and use regularly the slimming drug Ozempic for six months, her limbs continued to grow and cause pain.
‘I was constantly cutting,’ said Mrs Vandercruyssen.
“I had a personal trainer and I looked at my before pictures and then at myself after six months, and I looked worse.
‘I also had a strict diet and I still couldn’t get a handle on it.
‘I tried to cook everything. Lots of veggies, more protein than anything.
“I was on a low-carb diet, going to weight watchers, and an insane diet from my personal trainer.
Before the diagnosis, Mrs. Vandercruyssen said she felt like she was living in a suit
It wasn’t until 2022 that she stopped seeking professional help and turned to YouTube, where she found the diagnosis.
With the new knowledge, Mrs. Vandercruyssen returned to the medical community for the next steps.
Doctors said she will need six surgeries to remove the nodules – she has only had one at the moment.
‘[My legs] feels lumpy as the nodules form. It’s like tumors are forming under your skin. All the greasy spots felt like that,’ said Mrs Vandercruyssen.
“It’s harmful because it’s a progressive disease. It is constantly growing. Even normal things are painful when you sit on the nodules.
“It was a huge relief when I got diagnosed, but at the same time it was sad because I thought I could have had a lot more fun because I was way too focused on looks.”
Before her diagnosis, Mrs. Vandercruyssen’s unknown condition left her in constant pain.
She struggled with everyday activities such as going to work and said she felt like she was “living in a suit.”
Mrs Vandercruyssen said: ‘I had always been active and beautifully slim and then, with no changes in my lifestyle, I started getting taller and taller’
After her diagnosis, Ms. Vandercruyssen decided to have the lipedema nodules removed and traveled abroad for the surgery to a specialized center, Lipedema Surgery Center, Roswell, Georgia.
Ms. Vandercruyssen had to pay $8,000 for her first surgery, but the rest of her surgeries are covered by insurance.
“I was told I could be referred to a plastic surgeon, and the only option to get rid of it is surgery,” Ms Vandercruyssen said.
“It’s called water-assisted liposuction. They take a water hose, break off the nodules and suck it out.
“It’s right 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 1.7 liters from just my front thighs.”
Ms Vandercruyssen said she feels ‘relieved’ after the first round of her surgery.
She said, “I try to focus more on how I feel than how I look.
“It will be nice to be able to find my size more easily in stores, but feel more energy and walk without pain.
“I’m excited to see the muscles I’ve built all these years.”
Mrs. Vandercruyssen returns to the practice to have the rest of the lipedema nodules removed.
She said, “I know how sad and lonely it was to be in my body.
“But other people don’t know they’re doing everything they can and it’s not their fault at all.
“It’s very underdiagnosed and under-researched.”