Aisha Durham recalls the heaviness in her legs, the increasingly unbearable pain and the tissue hardening in her thighs.
“That was five years ago,” she said, opening a memory book of frustration, persistence and, finally, resourcefulness.
A four-year Florida odyssey included multiple physicians baffled by her symptoms. Was she developing lupus? Did she have venous insufficiency? Could it be a tumor?
“We had to get so many scans, so many,” she shares. “So much blood work to try to see what was happening.”
A common misdiagnosis: “You’re fat.”
Durham, 48, a communications professor at the University of South Florida, was more self-aware. It didn’t feel like obesity and diets didn’t help. Exercising led to increased discomfort. And it became more and more difficult to move, to experience life.
“This hurts. It’s painful, and that’s one of the characteristics that I now know that’s associated with lipedema,” she said during a recent episode of WUSF’s “Florida Matters Live & Local.”
Lipedema is often misdiagnosed. It’s a chronic condition that causes agonizing fatty tissue accumulation in the lower limbs and arms around times of hormonal change, such as puberty, pregnancy and just before menopause, according to the Lipedema Foundation.
Medical literature frequently cites lipedema may affect up to 11% of women in the U.S. or about 17 million, though the true number is largely unknown due to underdiagnosis and misdiagnosis. Nearly all patients are women.
Self-advocating to make the doctors believe
As her medical expenses ballooned, Durham came across online lipedema support groups. Members were posting pictures, “and I said that looks like me,” she said.
Some stats from Lipedema Foundation online registry:
- Lipedema may appear early in life, but the average age of diagnosis is 48.
- Participating women sought medical attention 17 years after first noticing symptoms.
- Most (59%) received a diagnosis from one or more healthcare professionals. Of these, 63% were diagnosed by a nonsurgeon doctor and 32% by a surgeon.
- Average daily pain for most participants was 5 on a 10-point pain scale.
- Leg heaviness, fatigue and easy bruising were the most frequent and severe symptoms.
- Nearly all participants report a family history of lipedema.
Source: Lipedema Foundation
That led her to a YouTube presentation on the condition by a Phoenix endocrinologist. Impressed and hopeful, she flew to Arizona for an evaluation.
“When I got the diagnosis, I just cried, I just cried,” Durham said.
The lack of public and medical awareness and the stigma associated with weight gain add to the personal trauma.
“One of the experiences that many women with lipedema experience is anxiety and depression, and that comes from the stigma associated with obesity, as well as just the almost dismissiveness of some doctors, and not in a malicious way,” Durham said.
According to the Lipedema Foundation, the associated pain is difficult to describe. What isn’t documented is often disregarded by providers not trained in recognizing the condition.
Armed with that knowledge, Durham, a researcher by trade, began to advocate for herself.
“Doctors really were focusing on the empirical data, and I thought if I could do the self-reporting and show them that information, then they would actually respond to me differently,” she said. “And I have to tell you, when I came with charts, when I came with a mapping, and I used to carry file folders of my information … they were listening differently.
“They heard my stories, they saw my photos, but they also saw the data that I presented, and that made them communicate with me in a different way.”
App fills an important need for patients
Understanding the amount of work that might take for most patients, she used her experience and ingenuity to create LippyLog, an app to help document symptoms of users who suspect they have lipedema or who have already been diagnosed.
People “can track their own symptoms, map their pain, the location, so that they can have some data,” Durham said. “I use the term ‘data’ in a very specific way, data to share with their healthcare team, so they can see possibly the progression of this condition over time.”
With LippyLog, she experienced better care and understanding from physicians.
“I felt like I was advocating for myself in the doctor's offices and medical appointments, and I felt like the app itself was another form of advocacy,” she said. “It was a way for me to translate my experience into systematic data.”
LippyLog is free to download, with a $2 fee for data export. Analytics and heat maps based on user input help the patient and doctors understand the progression of the condition and treatments.
While there is no cure for lipedema, there are treatments to manage symptoms and improve quality of life, according to the Lipedema Foundation. Approaches include compression therapy, weight management, physician therapy, pain medication, lymphatic drainage and fat removal.
Cracking the codes for better treatments
Durham said one of the biggest challenges is the lack of a dedicated medical billing code for lipedema, which affects everything from diagnosis to insurance coverage.
While physicians can sometimes use related codes tied to swelling or edema, she said the absence of a specific code has contributed to a lack of consensus and recognition of the disease.
That gap can make it difficult for patients to access treatments, she said. Insurance companies may decline to cover management options ranging from compression garments to pneumatic compression pumps, which can cost as much as $10,000.
“If insurance doesn't recognize the condition, it's not going to pay for the treatment or the management of the condition,” Durham said.
Because lipedema is progressive, Durham said early management is critical. Without proper treatment and monitoring, symptoms can worsen over time, leading to pain, disability and reduced mobility.
“At the end of the day,” she said, “if we don't have the management and the tracking of it so that we can manage it, it could be debilitating, and for some of us, we may not be mobile anymore.”
This story was compiled from an interview by Matthew Peddie for "Florida Matters Live & Local." You can listen to the full episode here. You can listen to the full interview in the media player above.
