A Michigan woman who assumed she was ‘curvy’ found the extra weight was due to a rare condition only addressed by draining 1.7 gallons of fluid from her legs. Alisa Vandercruyssen, 28, started to get bigger legs, arms and abdomen at age 17 – despite having an active lifestyle – and sought help from doctors who said she had a weight issue – they even gave her pamphlets for diet and exercise.
With nowhere else to turn, Vandercruyssen looked to YouTube for help and found the inability to lose the weight was due to lipoedema. Lipedema is a chronic condition of fat and connective tissue which builds up in your legs, hips, bottom and sometimes arms.
Ms Vandercruyssen, an aesthetician from Royal Oak, Michigan, is now undergoing surgeries to remove the lipedema nodules and is already feeling ‘relieved.’ She 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 bulk. I started to embrace it and thought, “I guess I’m this curvy girl; that’s how I am going to be.”‘
Lipoedema is a condition that exclusively plagues women, about one in nine, and typically starts during puberty, pregnancy or menopause. The exact cause is unknown. It causes fat below the surface of your skin to grow larger than usual, especially in the lower part of your body.
Aaron Mason, MD, FACS, FAAP, an aesthetic and reconstructive surgeon with Banner–University Medicine North, said in a blog post: ‘It can give the appearance 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 appears to be what Ms Vandercruyssen had suffered. She thinks the condition caused her to gain around 50 lbs (3.5st) since she was about 17 years old. Despite having a healthy diet, exercising regularly and using the weight loss drug Ozempic for six months, her limbs continued to grow and cause her pain.
‘I was constantly cutting,’ Ms Vandercruyssen said. ‘I had a personal trainer and looked at my before pictures and then at myself after six months, and I looked worse. I had a strict diet, too, and I still couldn’t get a hold of 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.
It was not until 2022 did she give up seeking professional help and turned to YouTube, where she found the diagnosis. With the new knowledge, Ms Vandercruyssen returned to the medical community for the next steps. Doctors said she needs six surgeries to remove the nodules – she currently has had just one.
‘[My legs] feel lumpy as its nodules form. It’s like tumours forming under your skin. All the fatty places felt like that,’ Ms Vandercruyssen said. ‘It’s harmful as it’s a progressive disease. It’s constantly growing. Even normal things are painful as you’re sitting on the nodules. 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.’
Before her diagnosis, Ms 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. After her diagnosis, Ms Vandercruyssen decided to have the lipoedema nodules removed and travelled out of state to a specialized centre, Lipedema Surgery Centre, Roswell, Georgia, for the surgery.
Ms Vandercruyssen had to fork out $8,000 for her first surgery, but the rest of her operations are covered by insurance. ‘I was told I could be referred to a plastic surgeon, and the only option of getting rid of it is surgery,’ Ms Vandercruyssen said.
‘It’s called water-assisted liposuction. They take a water hose, 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 1.7 gallons out of just my front upper thighs.’ Ms Vandercruyssen said she feels ‘relieved’ after the first round of her surgery.
She said: ‘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.’
Ms Vandercruyssen will be returning to the surgery to have the rest of the lipoedema nodules removed. She said: ‘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.’