Growing up, Soraya Nodrab said her legs always "looked funny" to her.
They looked different from other girls in her high school. And they hurt − a lot.
"I used to do a lot of running with my dad back then, and I would be in bed for days after that because it would hurt, and he would think it was an excuse," the 33-year-old recalled.
Despite staying active, she couldn't understand why her lower limbs gave her so much trouble as the years went on.
"My whole life, I always thought that was my fault. I always thought I was doing something wrong," Nodrab said.
It wasn't until two years ago she finally received a diagnosis: lipedema, a condition that causes fat accumulation in the lower body. It's been gaining more visibility online thanks to Doja Cat
and content creators like Nodrab who share their experience.
It was through TikTok that Nodrab first learned about the condition, saying she came across someone sharing an experience similar to her own.
"She showed her legs, and I was like, 'Oh my God, she has the same legs as me!'" Nodrab recounted, saying a doctor later confirmed she had it.
What is lipedema?
Unlike cellulite, which is primarily a cosmetic skin change, lipedema is a "chronic, painful and progressive fat accumulation disorder that can significantly affect a person's mobility, comfort and overall quality of life," Dr. Thomas Su, cosmetic surgeon at Artlipo who specializes in treating lipedema, told USA TODAY.
Lipedema fat behaves very differently than ordinary fat, he explained.
"Even when patients lose weight, the affected areas often don't respond the same way. Their legs or arms remain disproportionately larger, and the tissue itself is commonly painful, bruises easily and may feel firm or nodular beneath the skin," he said.
In addition to shape and pain, Nodrab says her legs also easily bruise and a have a profound heaviness.
Despite being in great cardio condition, she struggles to keep up with her friends' pace at spin class or running.
"At some point they were going super fast. I cannot do that. It's too heavy," she said, explaining how the extra weight on her legs hinders her.
In addition to chronic pain, heaviness and bruising, Su says patients can also experience swelling, decreased mobility and increasing difficulty with everyday activities as the disease progresses.
Researchers estimate that 1 in 72,000 people have lipedema, according to Cleveland Clinic, but this number is probably low due to it going undiagnosed or misdiagnosed as obesity. Another global estimate says 11% of females have lipedema, the clinic adds, noting that the condition is rare in males. Lipedema diagnoses are often made through a physical exam, review of your medical history and certain scans.
Nodrab got her official diagnosis shortly after getting into weightlifting.
"I could see definition on my back, on my arms a little bit. I couldn't see anything on my legs," she said, despite even going down a size or two. "I was thinking, this is so weird. My legs really don't change at all."
Plus, the pain persisted. After leg day or even walking, they would hurt "like crazy," she explained.
Su says he unfortunately hears similar stories from patients every day.
"They've spent years trying every diet, every workout and every weight loss program they could find, yet their legs or arms never changed the way the rest of their body did," he said. "Many have spent years blaming themselves, thinking they just weren't trying hard enough, when in reality they were living with a medical condition they had never even heard of."
Can you treat lipdema?
Treatment depends on the patient's symptoms and stage of condition, Su explained.
Conservative treatments − like lymphatic drainage, compression garments, low-impact exercise and anti-inflammatory nutrition − can help manage symptoms by reducing swelling, heaviness and pain, "but they do not remove the diseased lipedema fat or stop the progression of the disease," Su said.
To do that, patients with more advanced disease or significant symptoms can opt for specialized lipedema reduction surgery, he explained.
But for many patients, like Nodrab, surgery isn't an option due to financial or other constraints.
While treatments can be helpful, Cleveland Clinic notes that there is currently no cure for lipedema.
Though not fatal, in addition to the physical symptoms, the condition can also lead to difficulty walking, vein disease, secondary lymphedema (a blockage in the lymphatic pathway) as well as feet, joint and knee issues.
Plus, there's an "emotional burden" that often receives less attention, Su added.
"Many patients spend years being told their symptoms are their fault or that they simply need more discipline," he said. "That repeated frustration can lead to anxiety, depression, social withdrawal and a loss of confidence."
Doja Cat and the importance of representation
While Nodrab's diagnosis gave her a long-sought answer, it also caused her to reassess.
"I really felt like my world was in shambles because I had so many goals in terms of fitness," she said. "I was always thinking, you get the body that you work for. So, if I walk a lot, I'm going to have the body I want. But now, no. Even if I work super hard, I will never have the legs of my dream."
These challenges are what prompted her to start her Instagram page, where she shares her life and experience with nearly 24,000 followers.
"For my whole life I was hiding my legs," Nodrab said, but has now flipped her thinking − and wants others to join her.
"I really want women to just embrace their body. Yes, we have (lipedema), that sucks, but you can still ... show your legs. You can still live."
Earlier this year, Doja Cat posted a TikTok sharing how she suspects she has lipedema. The video gained 1.8 million likes and 15.8 million views. Some content creators even made videos sharing how much the video meant to them.
"Doja Cat saying she thinks she has lipedema has healed something in me ... our condition is finally getting noticed," user @liftinlucy posted on the app, garnering nearly 5 million views and 360,000 likes.
Nodrab said Doja Cat's post also made her "really happy," adding that the singer "has a big audience, so more people are going to hear about it."
But more awareness is still needed.
Su agrees lipedema is "often overlooked and misunderstood because many health care providers simply weren't taught to recognize it during their training."
"There's much more research being done today than there was even 10 or 15 years ago, but many providers still aren't familiar with it or may mistake it for obesity, cellulite or lymphedema," he explained, adding that it's a condition "that's only recently started getting the attention it deserves."
While she hopes more awareness and understanding are near, for now, Nodrab chooses to appreciate her legs' support despite the challenges she faces with them.
"At the end of the day, I can still walk, I still run, I can still bike, I can still lift," she said. "They don't look the way I want. They hurt a lot, but I still have legs."
This article originally appeared on USA TODAY: She thought her legs 'looked funny.' It was actually this condition
