Nordic House Spa

Lipedema Awareness Month is almost over.

And I want to end it by talking directly to the people who matter most in all of this.
Not the researchers. Not the surgeons. Not the clinicians debating frameworks in conference rooms.

You.

The woman who Googled her symptoms at 2am and finally found a word for what her body has been doing for years.
The one who has been told it is just weight. Just water. Just sensitivity. Just her.
You are not lazy. You are not making it up. You are not failing at being healthy.

You have a condition with a name. A condition that is real, that is measurable, and that more and more researchers and clinicians are finally taking seriously.

This month and since early this year I shared everything I learned at the Boston Lymphatic Symposium. Genetics. Imaging. Pain research. Surgery. Ethics. The uncomfortable questions and the even more uncomfortable answers.

I did it because I believe that informed patients get better care. And because as someone living with lipedema myself, I know what it feels like to finally be seen.

We are still figuring this out together. The researchers, the clinicians, and yes, us.
The lippies in the trenches every single day.
But we are figuring it out. And that matters. 🌿
Happy Lipedema Awareness Month.

I attended the Boston Lymphatic Symposium earlier this year with an open mind and left with more questions than answers.

Then someone sent me a video that reframed everything. This is what happened next. 🔗 Link in comments.

If you do not agree with me, that is ok :) we don't all have to believe the same thing or even agree on ALL treatment protocols, but we do need to have respectful conversation that are open and fully informed.

Last day of Pride month.🌈

In my work, everyone belongs on the table. That is not a policy, it is just who I am. 🌈

And speaking of showing up fully, I am heading to London on the 18th to take continuing education in post-op care with Aftercare Academy. Because the day I stop learning is the day I stop teaching.

See you on the other side of the Atlantic. ✈️

Boston Lymphatic Symposium 2026 – Rounding Out the Series

Panel Discussion: "Care for Lipedema Around the World"
Sandro Michelini, Rachelle Crescenzi, Ad Hendrickx, Stanley Rockson, Jonathan Kartt, Philipp Kruppa, Tobias Bertsch, Susan O'Hara

(These reflections are educational and not medical advice.)

The closing panel brought together eight researchers and clinicians from across Europe and the US to discuss what lipedema care looks like depending on where in the world you live. Different systems. Different frameworks. Different financial incentives. Different standards of care.

I could not stay quiet.
I stood up and asked the panel whether ultrasound imaging showing tissue abnormalities at the fascial layer, the kind used at my own diagnosis, could be a useful diagnostic tool. I introduced myself intentionally as a mere massage therapist. Not to be self-deprecating. To make a point.

The clinicians on the ground with patients every single day, who sometimes log more hands-on hours with these patients than many researchers ever will, deserve a seat at that table. At this point in Boston none of us had been on the speaker's stage.
It was also through BLS2026 that I connected with Dr. Tobias Bertsch, whose work I have referenced throughout this series. A follow-up conversation with him after the symposium shifted something in my clinical thinking. He wrote that voices like mine, clinically experienced, scientifically curious, and independent of trends, are essential for the future of this field. His kindness in that email keeps me going on the hard clinic days.

Also on this panel was Susan O'Hara, President of the American Lipedema Association, who has been working to secure dedicated ICD-10 diagnostic codes for lipedema. Since the symposium that work has come to fruition. This is a genuine milestone for the lipedema community. You cannot diagnose what you have no code for. And you cannot treat what you were never taught to recognize.

🔗 Learn more about the ICD codes: https://www.lipedema.org/icd-codes

This series has covered genetics, imaging, pain research, nutrition, self management, surgery, and ethics. I started it wanting to share what I learned. I am ending it with more questions than I arrived with.

Bridging gaps is not possible without transparency. In how research is funded. In why clinicians choose certain approaches. And in what the evidence actually supports versus what has simply become culturally accepted.

That conversation is not finished. One more post coming. 🌿

Boston Lymphatic Symposium 2026 – Keynote Address -
Pamela Hartzband MD and Jerome Groopman MD -Harvard Medical School, Beth Israel Deaconess Medical Center

"When Experts Disagree: The Art of Medical Decision-Making"

(These reflections are educational and not medical advice.)

The keynote on Day 2 was not about surgery or research findings. It was about something every lipedema patient needs to hear.
Why do experts disagree? And what do we do about it?

Dr. Hartzband and Dr. Groopman are Harvard physicians, authors of the New York Times bestseller "Your Medical Mind," and notably, married to each other. Two of the most educated medical minds in the country who will openly tell you that even they disagree on medical decisions. Not because one is wrong, but because they each carry different mindsets about risk, intervention, and what quality of life actually means.

Their framework of medical mindsets resonated deeply in a room full of lipedema researchers and clinicians. Maximalist versus minimalist. Technology driven versus naturalism oriented. Believer versus doubter. Every clinician carries one of these orientations. And so do you as a patient.

For people living with lipedema this matters enormously. Our condition sits at one of the most contested intersections in medicine. It primarily affects women. It involves fat tissue in a culture that has long dismissed and pathologized fat on women's bodies. It is underdiagnosed, underresearched, and shaped by financial incentives and systemic biases that do not disappear simply because a clinician has good intentions.

A maximalist surgeon may see every lipedema patient as a surgical candidate. A minimalist may undertreat. A believer may push confidently toward a plan before the evidence fully supports it. A doubter may leave a patient with no path forward at all. Or worse, doubt the patient's dedication to getting better.

None of these mindsets is inherently wrong. But none of them is neutral either.

So what do we do? We arm ourselves with knowledge. Know your condition. Know the evidence. Know which questions to ask. Understand that the recommendation you receive is shaped by more than your clinical picture. You are allowed to ask why. You are allowed to seek a second opinion. That is not being a difficult patient. That is being an informed one.

It was meaningful to see a keynote address medical bias as a broader framework, and I have done my best to connect it to the lipedema experience specifically.

📚 Groopman J and Hartzband P. Your Medical Mind. Penguin Press 2011.

Boston Lymphtic symposium 2026
Paula D

Conservative care for lipedema is not a consolation prize while waiting for surgery.

It is evidence based. It works. And it changes lives.

Dr. Paula Donahue's research showed meaningful improvements in pain and quality of life after just six weeks of multimodal physical therapy combining manual therapy, compression, exercise, and education.

Slide 4 is where my heart is. 🌿

Not medical advice. See my disclaimer video for context.

Day 2 of BLS2026 was surgical intense.
Eight presentations covering techniques, outcomes, long term results, and the state of the evidence.

I am not a surgeon. Surgery is outside my scope as a CLT and massage therapist. But I sat in that room as someone living with lipedema, and I think every patient navigating this decision deserves a clear, honest overview of what the research actually says.
These slides will not make the decision for you. But I hope they help you ask better questions.

For a much deeper dive I wrote a more comprehensive article on LinkedIn covering all eight presenters, the clinical questions nobody asked out loud, and what every lipedema patient deserves to know before consenting to surgery.

Link in comments. 🔗
Not medical advice. See my disclaimer video for context. Always consult a qualified specialist before making any surgical decision.

Happy Pride Month 🌈

Over the years, Nordic House Spa has been a safe space for people navigating all kinds of care, including post-operative support after gender-affirming surgeries. It is work I do not take lightly.

Something I want more people to understand: gender-affirming care is not only for transgender individuals. It is for cancer patients reclaiming their bodies after treatment. It is for anyone working their way back to feeling like their own true self.

I am bisexual, and creating a practice where everyone feels genuinely welcome has always mattered to me personally.

All are welcome here. Always.

InclusiveWellness PrideMonth