Raising Our Voices: Advocating for Lipedema Awareness in Medicine

I've been thinking a lot lately about what sparks change. It seems that it usually comes from frustration, anger, or necessity. Inventions are born, technological advances occur, and new methods that work faster or better are developed.

This reflection made me consider lipedema: a condition gaining visibility, yet still fighting for recognition in the medical world.

The Current State of Lipedema Awareness
Awareness of lipedema has increased significantly in recent years. More and more individuals are learning about the condition, recognizing themselves in the stories of brave patients worldwide who share their journeys. It's encouraging to see this growth, but there's still a long way to go.

Why are we still struggling to find doctors who have even heard of lipedema? Why are those treating patients with major hormonal changes—such as pediatricians and OBGYNs—not being educated on a condition significantly impacted by hormones?

This lack of knowledge is unacceptable. While strides have been made in raising awareness and promoting research, many patients are still left diagnosing themselves or scouring for doctors who understand the condition. This can't continue.

The Impact on Patients
To give you a glimpse into the struggle, let me share a personal story. During a recent visit to my gynecologist, he remarked, "You're a lot bigger than the last time I saw you." I replied, "Yes, I am," and attempted to educate him on lipedema. Unfortunately, he dismissed me, showing no interest in learning more about my condition.

I know many others have faced similar dismissals, leading to missed diagnoses and mistreatment. This disheartening reality is why proactive efforts to raise awareness within the medical community are essential.

A Call to Action
It's time for patients and allies to take an active role in raising lipedema awareness in the medical community. What does this look like? I'm not entirely sure, but I'm willing to get "messy"—to ruffle feathers, make mistakes, and figure it out as we go.

Here are a few tangible ideas:

Share Resources: Encourage patients to share educational materials with their doctors.
Engage Support Groups: Join or organize groups that actively engage with the medical community.
Partner with Organizations: Work with groups dedicated to raising awareness to create campaigns targeting medical institutions.

With Lipedema Awareness Month approaching in June, now is the perfect time to start a campaign that targets the medical community, educating them about lipedema and its impact.

Together, we can bring about the change needed, ensuring medical professionals are educated, patients are supported, and lipedema gains the recognition it deserves.