By Allison Peck
Listen to the full interview on our Kubota Podcast
A Cozad woman is hoping an upcoming fun run and walk will do more than raise money. She wants people to learn about a condition she says is often misunderstood and underdiagnosed.
Sara Drongesen is organizing the Lipedema Fun Run and Walk on August 22 at the Cozad Wellness Center. The event will include a 5K and a one-mile walk, with proceeds going toward Lipedema Simplified. The event's stated goal is to educate, advocate and support people living with lipedema.
Drongesen has lived with lipedema for much of her life.
She said the condition is hereditary and hormonal and can begin around puberty. For her, the physical changes started when she was young.
“Kids called me Buffalo Butt and Thunder Thighs when I was in junior high,” Drongesen said.
She said the condition became significantly worse later in life, particularly during menopause.
In 2019, Drongesen said she spent six months in a wheelchair and eventually underwent gastric bypass surgery so she could have a hip replacement.
She lost about 100 pounds following the surgery, but said the fat associated with lipedema remained.
“I have lost my obesity fat, but I have not lost my lipedema fat,” she said.
Drongesen said one of the most difficult aspects of the condition is the pain and swelling that can accompany it.
At one point, she said, she couldn't even tolerate a laptop sitting on her legs. She also remembers having to tell her grandchildren not to touch her because of the pain.
“I love you too, but just don't touch me,” she recalled telling them.
Drongesen said lipedema can also make everyday activities difficult. Before losing weight and becoming more active, she said she sometimes could only complete a few household tasks before needing to sit down.
“Basically, it's just try to be nice and not be, I don't know if it's condescending the right word,” she said when describing what she wants others to understand. “Just to have patience maybe?”
She said family members and caregivers can help by recognizing that someone with lipedema may be dealing with significant swelling, pain and fatigue by the end of the day.
“Give her a little grace,” Drongesen said.
Drongesen said treatment can include compression garments, compression pumps and manual lymphatic drainage. She also discussed surgical treatment, saying there are relatively few physicians in the United States who perform the procedure she was referring to.
She said greater recognition of lipedema is important because people living with the condition can sometimes be dismissed as simply needing to lose weight.
“Doctors just poo-poo you off saying, you're just fat, go home and lose weight,” Drongesen said.
According to Drongesen, she has also found a lack of support resources locally. She said there is currently one doctor in Lincoln who deals with lipedema and one support group in Nebraska, located in Omaha.
She hopes to eventually establish a support group closer to home.
The idea for the August 22 event came from Drongesen's daughter, who lives in Las Vegas and decided to run a marathon each month for a different charity. She chose lipedema for August.
Drongesen said she wanted to create an event locally because there are very few opportunities in the United States specifically focused on lipedema.
The Lipedema Fun Run and Walk will be held at the Cozad Wellness Center. The 5K has an 8:30 a.m. check-in, while check-in for the one-mile walk begins at 9 a.m. The event is expected to get underway around 9 to 9:30 a.m.
Registration is $40 for the 5K and $30 for the one-mile walk, with late registration listed at $50 after August 10. Participants will receive T-shirts and finishers' medals. People can also donate or purchase a shirt without participating in the race.
Drongesen said she specifically chose the Cozad Wellness Center because of its indoor track.
“If women show up and they are on walkers or wheelchairs, I want them to be inside and comfortable,” she said.
Those who want to participate, volunteer or support the event financially are encouraged to get involved.
For Drongesen, though, the most important goal is making sure more people recognize lipedema.
“I just want everybody to get to know what it is,” she said.