I have been thinking about writing this little note for a while, because sometimes I get so caught up in researching, reading, writing and planning new articles that I forget to stop and appreciate what LipedemaScience is becoming.
We are now approaching 2,000 (!!) readers from 63 (!!!) countries, which still feels a little surreal to me. When I started LipedemaScience, I wanted to create a place where people could learn about lipedema through science, research and thoughtful discussions. A place where curiosity was encouraged, questions were welcome, and information was presented in a way that people could actually understand and use. And today, I am so happy to see people from all over the world finding their way here.
A little glimpse behind the scenes
Something you might not know is that I spend approximately four hours every day working on LipedemaScience. Sometimes more, sometimes less, but it has become a very meaningful part of my everyday life. My list of things I want to write about is getting ridiculously looong!
I have articles that I have started, articles that I am currently researching, scientific papers waiting to be read, researchers I would love to interview, and topics that I keep adding to my list because I find them so interesting.
Sometimes I start researching one question and end up discovering five other things I want to understand better. And I absolutely love that part of the process.
With my background in human nutrition and food science, I have always enjoyed digging into research, asking questions and trying to understand how things work. Having lipedema myself has naturally made this particular field of research very personal to me.
But what makes LipedemaScience especially meaningful is knowing that I am no longer doing all this reading and learning just for myself. I get to share it with you.
We are all at different stages of life
One thing I think about quite often when planning new content is how incredibly different we all are…
Some of you are very young, perhaps trying to understand changes in your body or navigating a recent diagnosis. Others have lived with lipedema for decades and have accumulated an enormous amount of personal experience. Some are thinking about pregnancy or going through hormonal changes. Others are navigating perimenopause or menopause and wondering how these transitions might influence their symptoms.
Some of you have undergone surgery, while others are considering it or have decided that surgery is not the right path for them.
Some are living with relatively mild symptoms, while others are dealing with substantial pain, mobility limitations and daily challenges.
We also have men living with lipedema in this community, something I think deserves more attention and understanding!
And then there are the researchers, healthcare professionals, clinicians and other experts who follow LipedemaScience because they are interested in the science and developments within the field.
I find this diversity genuinely fascinating.
We may have very different experiences, backgrounds and needs, but we share an interest in understanding lipedema better. And that is something I want to reflect in the content I create.
I know that not every article will be equally relevant to every reader. An article about pregnancy might be incredibly valuable to someone preparing to become a mother, while another reader may be much more interested in pain mechanisms, nutrition, surgery or new clinical research.
My ambition is to build a platform where, over time, everyone can find something meaningful, interesting or useful.
I would love for this to become an even more active community
Although I write most of the articles, I never wanted LipedemaScience to be a place where information only travels in one direction. I want to learn from you, too.
I love when you leave comments, ask questions, share personal experiences or challenge something you have read. Sometimes a question from one reader gives me an idea for an entirely new article. And sometimes your experiences raise questions that science has not yet answered.
That is part of what makes this so interesting. If there is something you would like me to investigate, a study you have come across, or a topic you feel deserves more attention, please tell me!
I cannot promise to cover absolutely everything, but I do read your suggestions, and they genuinely influence what I work on.
I would also love to see more conversations between readers. With people joining us from 63 different countries, there is so much knowledge and experience within this community.
A few ways to get more out of LipedemaScience
If you are new here, I also want to make sure you know that there are several ways to enjoy the content.
You can read everything directly on LipedemaScience.com, or you can download the Substack app, which makes it easy to follow new articles, explore previous publications and participate in discussions.
You can also listen to articles in audio format through Substack, which I know can be convenient when you are walking, travelling, cooking or simply prefer listening rather than reading. And please feel free to share articles with anyone you think might benefit from them.
Whether that is a friend who has just received a diagnosis, a family member trying to understand lipedema, a healthcare professional or someone who is simply curious.
Every time you share something from LipedemaScience, you help scientific information reach someone new. And I appreciate that more than you might realize.
Finally, a personal thank you
Building LipedemaScience has become one of the most rewarding things I have done. Not because of the number of subscribers, although watching this little community grow is certainly exciting, but because of the people I have met along the way.
I have had conversations with researchers, surgeons, healthcare professionals and women from so many different parts of the world. Some have shared their professional knowledge, while others have trusted me with deeply personal stories about living with lipedema.
I have learned so much from these conversations. And I hope to keep learning. There is still an enormous amount we do not understand about lipedema. Research is developing, new questions are emerging, and many aspects of the condition remain uncertain.
I want LipedemaScience to be a place where we can follow that progress together, remain curious, and be comfortable acknowledging what science has not yet established.
My list of articles is certainly not getting any shorter, so I think we have plenty to explore in the years ahead!
To everyone who reads, comments, shares, supports or simply follows along quietly, thank you!!
I am genuinely grateful that you have chosen to be here, and I hope you continue to find value in what I share. And now I would love to hear from you.
Where in the world are you reading LipedemaScience from? And is there a particular topic you would love to see me cover in a future article?
I would love to get to know more of you.
With love and curiosity,
CarinaW
Founder, LipedemaScience
Thank you, Carina! ❤️💐