A resource for advocating for a diagnosis and effective treatment.
Shortly after puberty, Jaime began to put on weight, especially in her legs and arms. Like many teens struggling with weight issues, Jaime thought she needed to cut calories and exercise more, and went on the first of many diets. In high school, she danced as part of a team and, later in college, she taught dance. While dancing, she experienced bouts of pain in her legs. Several times the pain was so severe that she visited the emergency room, fearing she had a blood clot.
As the years passed, Jaime saw many doctors and had bariatric surgery. After the surgery, she lost more than 100 pounds, but her legs and arms remained large. It was only when she Googled “giant arms” late one evening that she came across information on Lipedema. She felt an immediate shock of recognition – she saw herself in those images.
Armed with this knowledge, Jaime found a doctor with experience diagnosing and treating Lipedema. She received a formal diagnosis and is finally receiving treatment-specific care, including compression garments and lymphatic massage.
Millions of people may suffer from Lipedema. Many, like Jaime, experience a long journey to diagnosis. It can take years or even decades, and the process can be rife with detours and misdiagnoses. On average, participants in the Lipedema Foundation Registry sought medical attention 17 years after the appearance of symptoms and getting a diagnosis took an additional 10 years. Lipedema is often mistaken for other conditions, including obesity, lymphedema and venous insufficiency.
People with Lipedema face many challenges rooted within the healthcare system, as well as cultural bias. Well-intentioned friends, family and medical professionals may tell them to change their diet and exercise to lose weight — yet Lipedema seems to be resistant to weight loss. This experience can make people feel unheard and desperate and can lead to depression and other mental health problems. These experiences and the lack of treatments create fertile ground for bad actors to promise miracle cures.
How a (work in progress!) Patient’s Bill of Rights Can Help
People with Lipedema deserve a timely diagnosis and evidence-based care that is specific to their disease. They deserve respect, understanding, and support. At the same time, they must navigate systems biased against them to receive a diagnosis and treatment.
We know these systems won’t change overnight. But knowing what people like Jaime have learned can help. Knowing your rights, and how to claim them, can help.
The Lipedema Foundation worked with patients and health care providers to develop a draft Patient’s Bill of Rights* — a list of aspirations for patients and ideas and suggestions for how to pursue them. It is a work-in-progress guide for how to advocate for yourself, based on experience from people like you.
For example, many medical professionals have little experience with or knowledge of Lipedema. Some may view Lipedema as an “internet disease” and be dismissive of symptoms. Others may want to learn how to diagnose and treat Lipedema, but there is no objective test (for example, a blood test) for diagnosing the condition. Instead, doctors must arrive at a diagnosis based on the appearance and physical characteristics of the fatty tissue, its distribution, and by ruling out alternative diagnoses.
Very few doctors are comfortable making a Lipedema diagnosis based on patient history and physical exam. Further complicating the work is the outdated notion that there are no treatments that can help Lipedema. The difficulty of obtaining a formal diagnosis places a heavy burden on people with Lipedema. They have to navigate a complex and sometimes indifferent medical system. And all too often, even after receiving a diagnosis, they have to fight to receive Lipedema-specific treatments.
Use the Patient’s Bill of Rights to navigate the healthcare system and advocate for treatment.
The Patient’s Bill of Rights can help people navigate the healthcare system and advocate for treatment. It outlines strategies for pursuing a formal diagnosis and disease-specific treatments. These strategies and resources can help you get a diagnosis earlier, which may expand your treatment options and prevent complications like pain and loss of mobility. They can also reduce the stress and frustrations so many people with Lipedema experience trying to get proper medical care.
The Patient’s Bill of Rights also emphasizes the importance of comprehensive, evidence-based care. This care should be tailored to the individual. As care for Lipedema continues to evolve, the Patient’s Bill of Rights will also connect you to opportunities to take part in research and to learn about the latest findings.
Tell Us What Works for You
The Lipedema Foundation wants to keep building on the experience of people with Lipedema and the medical professionals who care for them. Different strategies for securing proper medical care will work for different people. The ability to receive proper care can depend on where a person lives and what type of health insurance they have. Stereotypes about their appearance, symptoms, and gender can also impact their ability to receive care.
Because we know that care and outcomes are highly individual, we want to hear from you. Join us on social media to let us know: What in the Patient’s Bill of Rights resonates with you? If you have used elements of the Patient’s Bill of Rights to help navigate your care, what has - or hasn’t - worked? With your input, the Patient’s Bill of Rights can be a living document, one that will evolve as we learn from each other’s experiences and as the scientific understanding of Lipedema continues to grow.
*Please note that the term "Patient's Bill of Rights" is sometimes used by medical providers (e.g., hospitals, doctors' offices) to disclose rights, expectations and entitlements belonging to patients. The Lipedema Foundation is not a medical provider, and we can't guarantee that you will receive these rights from your healthcare providers. Our hope in sharing this document is to present a framework and to share strategies and resources that might help you in pursuing a diagnosis and effective care from licensed medical professionals.
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