Four sources for learning about lipedema

You can learn about lipedema from four sources. I learn from all four, because each gives me a different kind of knowledge.

First is science. Scientific research gives us a deeper understanding of what causes the disease, how to treat it, and what researchers should focus on in upcoming studies.

Second, there are professionals who work closely with lipedema patients. They have a kind of deep, practical knowledge that is very valuable for us living with the disease. When I was going through surgery, my main resources were my surgeon, of course, and also my physiotherapist. She played an essential role in building my understanding of lipedema. Every time I went to my manual lymph drainage sessions, I had a thousand questions for her. She guided me with all her wisdom and lived experience, and I will be grateful for that for the rest of my life. I also asked her to come to the hospital for one of my surgeries so she could see the procedure live and ask the surgeon the questions she was wondering about.

Third, there are other lipedema patients. People are generally very curious and hands-on with their own health. Many have asked me thoughtful, reflective questions that guide me to dive deeper into what they have been thinking about, and that is incredibly valuable for my own learning. Since 2021, I have spoken with thousands of women with lipedema from all around the world, and I am thankful for every conversation I have had.

Fourth, there is myself: learning about my own body, my own history, and the journey I have been on. Reflecting on the past helps me navigate the future. My body is very sensitive to hormones, stress, and inflammatory foods, especially refined sugar. Hormonal birth control was my lipedema trigger, and when I was a teenager, my GP wanted me to switch to a different type of birth control six months after I had started, because my body was changing so rapidly. We understood that it was the birth control that caused these changes. Stressful periods in my life have also worsened my lipedema – especially when I was working on my master’s degree in food science. My swelling became so severe that I started my lipedema surgery journey the year after I finished, because I was in so much pain.

So my guidance to you, if you follow me to learn about lipedema, is to learn from all four sources: scientific studies, professionals, others with lipedema, and yourself. Find your own path. Do not compare yourself with others. Never judge someone else’s journey; instead, support those who choose a different route than you, be curious, and cheer for their progress and success. This is how we can keep the worldwide lipedema community positive and sustainable.

Thank you for reading. Your support means so much to me and motivates me to keep writing and sharing knowledge about lipedema every single day.