Diagnosis Spotlight: Lipedema

Diagnosis Spotlight: Lipedema

Imagine living with a disease that no one understands. Instructors do not teach it in medical school, and less than three percent of physicians are aware of it. It mimics obesity in the arms and legs, but creates pain, fatigue, easy bruising, swelling, and inflammation. It only gets worse over time, leading to permanent damage. Treatment is complicated, too. Many doctors do not offer it, and insurance companies often do not cover it. While lipedema can be a daunting condition, the experience is slowly getting easier.

Dr. David Amron, MD and his patient, Crystal Blount. Dr. Amron, a dermatologic surgeon, is “the leading lipedema treatment specialist” who “has established the most effective treatment for lipedema known today” (Amron MD, 2015). Blount, his patient, is a passionate advocate for others like herself with the disease. Together, they are fighting the stigmas of lipedema.

The Progression

Lipedema is about so much more than having disproportionate arms and legs. Lipedema is an ongoing storage of diseased, fibrous fat that does not respond to diet and exercise. “You get a very characteristic column-like look to the legs from the thigh area all the way down to the ankles . . . and along with it goes typically quite a bit of pain, decreased mobility, easy bruisability, and it progressively gets worse,” explains Amron. Some patients inherit the condition, and some do not. Nearly all lipedema patients are women.

Lipedema also has four stages:

  • Stage One: Mild severity
  • Stage Two: Moderate severity
  • Stage Three: Advanced severity
  • Stage Four: Extreme severity

“But the pain is not always in relation to the degree of the lipedema itself,” he adds (Amron, 2015).  

Lipedema also has a surprising accompaniment. “I have a comorbidity that’s pretty common with lipedema patients. I have been diagnosed with Ehlers Danlos syndrome type III, hypermobility” (Blount, 2015). It’s not just about having “fat legs.” Lipedema can really cause significant issues.

Not surprisingly, Blount’s personal experience with lipedema is unpleasant. During “puberty, I noticed an enlargement of my calves and ankles, [but the] doctors . . . told [me] that I was overweight and needed to lose weight. So 9, 10 years old, I was already being labeled obese . . . I wasn’t able to run like the other kids . . . and I was bullied a lot, [and] called a lot of names. From there, the disease only escalated. She developed tightened skin, eczema, shin splints, and cuffs of fat around her ankles. The pain, she said, was “like an aching, deep, throbbing pain” (Blount, 2015).

Diagnosis

A good first step in the treatment of lipedema is to get a diagnosis. For many, however, this is no easy feat. Dr. Amron reveals that “in the U.S., very very few physicians and surgeons and even plastic surgeons have heard of lipedema . . . three percent, at most, of doctors have heard of it. And the public, also, is very very unaware of it” (Amron, 2015). He and Dr. Karen Herbst are some of the precious few in the medical community who deal with the disease.

The key, says Blount, is persistence. She urges all lipedema patients to “take charge [and] be [your] own advocates” (Blount, 2015). She saw a string of doctors who had never heard of the disease, but it never deterred her. “I tried to simplify the differential diagnosis criteria for my doctor. I literally printed out the pages, and did my own research, and determined what I needed, and I went into my doctor’s office and said, ‘Here’s what I have, here’s what I need, and I need you to write me a prescription for it.’”

Initial Treatment

Before undergoing liposuction, patients should participate in compression therapy, which includes anti-inflammatory medications . . . compression and decongestive therapy . . . manual lymphatic drainage, compression pumps . . . supplements [such as] Selenium, or Butcher’s Broom, [and] MLD therapists” (Amron, 2015). Though these treatments offer only temporary relief, they are important. Before surgery, compression therapy will get “the lymphedema under control first” (Blount, 2015). Then, “for several weeks after [surgery, it can] help with the reduction of swelling” and healing  (Amron, 2015).

Treatment Obstacles

The only cure for lipedema is lymphatic-sparing, tumescent liposuction at the hands of an expert surgeon. The difficulty in obtaining this treatment, however, is twofold. First, many plastic surgeons won’t even attempt lipedema cases. Treatment is complex and precise; an inexperienced surgeon can actually make the condition worse. Second, even though liposuction is a medical necessity in this case, the insurance company may not agree. Blount obtained a letter of medical necessity from three sources – Dr. Karen Herbst, her primary doctor, and her podiatrist, “who evaluated [her] gait . . . [and] with that, I was able to go to my insurance and get some help for it,” she explained (Blount, 2015). Her insurance then denied coverage for her second surgery, but she appealed and won “based on the need for reconstructive surgery to correct a deformity that’s limiting my mobility” (Blount, 2015).    

Speaking Out

What was once an obscure, neglected mystery is now an established disease. Patients no longer have to suffer in silence. “The main thing I want to get across to the medical community, is that these types of complaints, they really should be taken seriously; the information is out there. It’s out there now, and so there’s really no excuse for any woman to have to suffer” (Blount, 2015).

The awareness is happening, and it’s long overdue. All lipedema patients deserve acknowledgement, quality treatment, and a full recovery. The stigma and shame are fading, yielding only truth and hope. It’s time to fight for a healthier tomorrow. And it’s time to win.

Resources

Amron, D. (2015, May 22). Interview by D.C. Brownlee [Audio Tape Recording]. Dr. Amron.mp3.

Amron MD. (2015). Retrieved from http://www.amronmd.com/

Blount, C. (2015, May 22). Interview by D.C. Brownlee [Audio Tape Recording]. Crystal Blount.mp3.

Published by

Deanna Brownlee

Deanna Brownlee

My name is Deanna Brownlee, and I have an undiagnosed disease. For 10 years, my unidentified illness has yielded only futility and heartbreak. As much as it has stolen from me, however, writing has always remained by my side. I am truly honored to be part of the CrowdMed team.