Lipedema Patient’s Bill of Rights

Every person with Lipedema deserves to have timely diagnosis and treatment options. This Lipedema Patient’s “Bill of Rights”* is designed to help patients  navigate the process to get a proper diagnosis and find effective care, and overcome obstacles due to systemic and cultural bias.

Lipedema is not rare, but a proper diagnosis is rarely made, leaving many people cut off from treatment options. 

The Lipedema Foundation believes that every person deserves a timely diagnosis, disease-specific care, and other forms of support. To help achieve this, we have worked with patients and healthcare providers to develop and share strategies to help you navigate the frustrating process of seeking care. 

Not everyone will be able to pursue all of these strategies. Your specific symptoms, insurance coverage, and even location may make a difference. Also, some obstacles are systemic. In an ideal world, all healthcare providers would provide compassionate, appropriate care to those who need it. But these ideas might help increase your chances of getting a diagnosis and effective care. 

We are interested to hear what has been successful for you. Please share your thoughts with us at info@lipedema.org. Click here to download an abridged version of the Patient’s Bill of Rights.

*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.

Here’s our list of 10 Lipedema patient rights:

A timely Lipedema diagnosis can increase and improve your treatment options. If you suspect you have Lipedema, ask your healthcare provider to consider that possibility. Many providers may not be familiar with Lipedema. Historically, lymphedema therapists have been the most reliable identifiers of Lipedema, and some vascular doctors have expertise in diagnosing the condition. Seek another opinion if your provider is not open to discussion.

Lipedema can affect many parts of the body, so care management may include working with a variety of health professionals. Consider having a healthcare team in place to help manage your symptoms. The team may include primary care doctors, nutritionists, therapists, mental health professionals, and others. But many specialists are unfamiliar with Lipedema, so make sure they have some knowledge or are willing to learn about the condition.

Though there is currently no silver-bullet cure for Lipedema, symptom management strategies are available to help patients. The best way to access these strategies is to be informed about them. Your care may involve a combination of treatments, such as physical activity or compression garments. In certain cases, liposuction or reductive surgery may be options for some people, but are not always available or recommended.

Because Lipedema can appear alongside obesity, providers may not always distinguish the two. But Lipedema is not the same as obesity. Some people with Lipedema may need special accommodations due to their size. Don’t be afraid to ask for a large-sized exam gown or blood pressure cuff, or to be weighed in a private area.

Be wary of bad actors who promise a cure or quick fix to Lipedema. Ask your provider about realistic treatment options and symptom management. Any healthcare provider should give you clear, transparent answers about their own patients’ outcomes—both good and bad.

Your provider should discuss the costs of care when developing your treatment plan. Make sure you obtain affordable treatment options. Not all non-surgical treatments are covered by health insurance – find out what out-of-pocket costs may be before beginning any treatment. Be upfront with your provider if the recommended treatment(s) present a financial hardship. Work with their office staff to find more affordable alternatives. 

Although depression and anxiety occur at higher rates among people with Lipedema, not all providers may initiate conversations about patient mental health. If you are experiencing symptoms, tell your provider how you are feeling so that you can obtain a mental health screening and get resources and referrals that can help.

In certain situations, you may feel as if you are not being treated with respect. For example, studies show that women’s pain is more likely to be taken less seriously than men. If you are a woman, be aware of these types of gender bias. You deserve to be listened to with respect and without bias, stereotypes, or preconceptions. If a healthcare professional is dismissive of your experience, seek another provider.

Care for Lipedema should be individualized, and that requires dialogue between you and your provider. Expect providers to be responsive to open dialogue and if not, seek a different provider if efforts at communication are ignored or dismissed.

Research on Lipedema is constantly evolving and growing. Stay informed as recommended treatments and protocols evolve by consulting the Lipedema Foundation’s website, which has tools that can help you find research studies and recruitment opportunities for clinical trials.