Imagine having a certain kind of fat that won't go away no matter how much you diet or exercise.
In fact, over time, the fat cells just get progressively bigger.
Now there's hope for the millions of women with this painful, disabling type of weight gain.
It's called lipedema.
Some patients call it a disease of shame.
"We still get horrible things said to us by doctors," says Tina Mueller, diagnosed with lipedema just last year. "'Put the fork down,' 'Stop eating,' 'Oh, you need to go on a water pill.'"
But when she found the office of Dr. Donald Buck, the shaming stopped.
For the first time in her life, a physician was able to tell 52-year-old Mueller what she had known all her life.
"When he finally said to me, 'You know this isn't your fault right?' That's when I really got my diagnosis," says Mueller.
Fat cells in the arms and legs grow abnormally large.
"The lipedema fat is completely resistant to diet, exercise and bariatric surgery actually," says Dr. Donald Buck II, Christian Hospital plastic surgeon and assistant professor in the division of plastic surgery at Washington University School of Medicine. "You ultimately get this characteristic appearance of column- like legs.
Men can get lipedema too. And what makes this fat so different is how uneven it looks on the body.
"I've never worn shorts," says Tina, "I've never worn boots, I've never worn skirts, I've never worn a bathing suit. Those are just not things you do when you have this," says Mueller.
Fat that's not just unsightly, but painful.
"It's very common for patients to say I sit on the couch my legs hurt, my dog jumps on my lap and I want to jump through the roof," says Dr. Buck.
"They have significant pain, they have tenderness, they have heaviness," and are prone to bruising says Dr. Buck. "As it progresses in severity, they may become immobile."
The psychological effects can be devastating, leading to anxiety, depression, isolation, and even eating disorders.
"I put myself on a super strict-caloric diet and you could see my rib cage, you could see my ribs, my face was gaunt, my hands were just sticks, but my legs and my arms were still big," says Tina.
And lipedema is a disease that just continues to get worse with time.
"It progresses," says Dr. Buck. "They don't know how, but it can come in times of stress, puberty, peri-menopause, pregnancy."
Lipedema was discovered in 1940. And even though 75 years have passed, not much is known about it. In fact most doctors don't even know about it.
"It's not something that we're taught in medical school," says Dr. Buck. "It's not something that we learn necessarily in residency training, and so there's this lack of awareness and an educational gap. So the physicians who are seeing these patients don't understand it, don't recognize it, don't realize it's such a common problem, that it's not at the top of their list of what's happening."
No one knows the exact cause, but it does run in families.
And there is treatment.
Tina uses compression garments to keep the fat cells small, and prevent swelling.
In fact, Tina not only has lipedema. She also battles another disease that sounds similar called lymphedema, where the body has trouble draining fluids and toxins.
So almost every day, she uses a machine that helps keep her body from retaining too much water.
She also follows a special diet. But the most important treatment is liposuction. Not the kind used for cosmetic purposes. A special lipo surgery done in several stages.
Patients from all over the country come to Dr. Buck's office to explore surgical treatment. He sees three to five new patients with lipedema every week.
Liposuction for lipedema can range from $4 thousand to $14 thousand in the St. Louis metro area. Similar surgery in other parts of the country can cost between $10 thousand and $14 thousand.
Some insurance companies will cover the cost of the surgical treatment. But not all. Some insurance companies still consider liposuction to be a purely cosmetic procedure.
Tina's had three operations that her insurance covered after she appealed an initial denial. She's very happy with the results.
"The very first surgery I had, I always had trouble driving because the pressure of the seat on my legs," says Tina. "And first surgery, within three days, I was driving like a normal person. I didn't need the pillow, I could get out of my car. I could not believe it. It was amazing."
Another first? She's running. Something she hasn't been able to do in years. And for the first time in her life, she starting to see her body in a different way.
"I'm going to be in normal clothes one day, that's one thing," says Tina. "But just amazing, on a one to ten, I'd go 12. Just because it's changed my life."
No one knows for sure if the fat cells will come back, once they've been removed. But that hasn't been seen in the eight-to-ten years that surgery has been done to treat lipedema.
Tina has two more operations scheduled on her legs, and also wants to address the lipedema in her arms.
If you think you have lipedema, consider seeing a vascular surgeon for a diagnosis, and a plastic surgeon for treatment.
Dr. Buck can be reached at (314) 653-5806.
