Is It Time to Rename Lipedema?
Exploring alternative names for this far more complex disease we call "Painful Fat"
You may have seen how easily the name lipedema can get mixed up and misconstrued as a different condition.
When I visit a medical provider nowadays and am asked if I have any chronic conditions, I will mention that I have lipedema. I know that most doctors don’t know what the heck I’m talking about because their eyes glaze over, and they nod their heads but don’t type my information into their notes.
However, those who inquire further will usually refer to lymphedema—swelling in the extremities, or hyperlipidemia—high-fat levels in the blood, which is an indicator of cardiovascular disease. If that happens, I correct them, and then get the glazed-over eyes.
I don’t like it, but I’m used to it.
Honestly, I don’t like the name Lipedema. I have never liked it; I don’t think it adequately represents the disease. So, when I saw that there’s been a consideration for changing the name of our disease, I welcomed the idea of this change.
I have seen how easily the name lipedema can get mixed up and misconstrued as a different condition, even in the medical community. The name sounds too similar to other conditions, and the medical terminology— Fat Swelling (lipo=fat, edema=swelling)—doesn’t fully encompass this condition and may actually misrepresent what we have going on in our body.
Researchers and advocates have proposed several alternative names over the years to reflect its symptoms, pathophysiology, or root causes.
Before I get into the descriptions, I want to know what you think about these proposed alternative names, so please weigh in on this poll below:
Below are some of the proposed names and the rationale behind them:
1. Adiposis Dolorosa (Painful Fat Syndrome)
Reason for the Name: Highlights the chronic pain associated with the condition and its link to fat accumulation.
Con: Sometimes confused with Dercum’s disease, which also involves painful fat deposits, making it less distinct for lipedema specifically.
2. Lipoedema (UK/Australian Spelling)
Reason for the Name: The original spelling used in Europe and other English-speaking countries outside the U.S.
Con: The term is phonetically closer to "lymphedema," which can cause confusion but aligns with the condition's global recognition.
3. Lipalgia (Painful Fat)
Reason for the Name: Combines "lip-" (fat) with "algia" (pain) to emphasize the hallmark symptom of painful fat tissue.
Con: A simple, descriptive term proposed for easier recognition, but again may not wholly represent the syndrome of lipedema.
4. Lipomatosis Painosa (Painful Lipomatosis)
Reason for the Name: Reflects the fat deposits ("lipomatosis") and their association with pain, differentiating it from other fat disorders.
Con: This name aligns with medical terminology but is less commonly used in patient advocacy.
5. Lympholipedema or Lymphatic Lipedema
Reason for the Name: Incorporates the lymphatic dysfunction often present in lipedema, acknowledging that impaired lymphatic drainage can worsen symptoms.
Con: Advocated by some researchers to bridge the understanding of lipedema and its relationship to the lymphatic system. However, some women with lipedema (especially earlier stages) do not have a lymphatic disease component.
6. Fatty Deposition Disorder
Reason for the Name: Emphasizes the abnormal fat storage in the condition while avoiding terms that imply weight gain due to lifestyle or diet.
Con: Neutral language aimed at reducing stigma around weight and appearance.
7. Adipofascial Disorder
Reason for the Name: Suggests a disorder of both the fat (adipose tissue) and the fascial layer beneath the skin, highlighting structural changes.
Con: Proposed to better align with modern research into connective tissue involvement. I can see where lay people could misread this as “facial” which would be a completely different description than fascial.
8. Estrogen-Related Fat Disorder (ERFD)
Reason for the Name: Reflects the hormonal component of lipedema, as it often manifests or worsens during hormonal shifts (e.g., puberty, pregnancy, menopause).
Con: A more specific term that ties lipedema to its hormonal triggers, not encompassing all of lipedema.
9. Lipofibroedema
Reason for the Name: Acknowledges the fibrotic changes in fat tissue and its potential overlap with lymphedema.
Con: Used occasionally in Europe but is not widely adopted.
10. Lipedema Spectrum Disorder (LSD)
Reason for the Name: Highlights the variation in symptoms and severity among those with lipedema.
Con: Useful for research and advocacy but less common in clinical settings. LSD? I don’t like it.
RASS (Radical Adipose Tissue Storage Syndrome)
RASS is another proposed name for lipedema that has gained some attention in the medical and patient communities. It was introduced as an alternative to "lipedema" to better reflect the condition's underlying mechanisms and to distinguish it from other fat disorders.
Rationale Behind RASS
Radical Adipose Tissue Storage:
Emphasizes the abnormal and disproportionate storage of fat tissue in specific areas of the body, a lipedema hallmark.
Highlights the idea that this fat accumulation is resistant to diet and exercise, making it distinct from obesity.
Syndrome:
Indicates that this is not a singular disease but a collection of symptoms that define a broader syndrome, including pain, swelling, and connective tissue changes.
Benefits of the Term RASS
Reduces Stigma: By moving away from the term "lipedema," which can sometimes be misunderstood as obesity-related, RASS focuses on the biological nature of the condition.
Broadens Understanding: Incorporates the concept of fat tissue as an active component of the disease process, involving inflammation and lymphatic dysfunction.
Encourages Research: A new name can draw attention to the need for further study into the genetic, hormonal, and inflammatory components of the condition.
Challenges of Adopting RASS
Awareness and Advocacy: The term "lipedema" is already gaining recognition in medical and insurance systems, so changing the name could disrupt progress.
Medical Acceptance: It takes time for new terminology to be adopted across clinical and research communities, especially without widespread consensus.
Current Status
RASS remains a proposed alternative but is not yet widely used in clinical or advocacy contexts. It represents a push toward reframing lipedema as a more systemic and complex condition rather than a localized fat disorder.
If there’s ever a time to change the name of lipedema, now would be the time, as awareness and advocacy continue to spread. I’m curious about what you think. Let me know!
Take care,
Michelle
I so appreciate your Substack. Really love your voice for and with us Lipedema folks. Thank you.
Yes, I’m so weary of wellness culture speaking into it as well with “if you just..” or “have you tried..”. I think highlighting the chronic progressiveness of it would also be helpful!!!