The need for a diagnostic code for lipedema
In the bymag.nos article "Kampen for diagnose" (Norwegian article) ("The Fight for a Diagnosis"), the challenges many patients face within the healthcare system are highlighted. Hildur Skuladottir, project leader for lipedema research at Haraldsplass, describes the lack of a diagnostic code as problematic, leading to patients not receiving the necessary help from the healthcare system.
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Hildur Skuladottir, MD. Phd, a plastic surgeon at Haraldsplass Deaconess Hospital, points out that it is very difficult to estimate the scale of the problem. Without a diagnostic code, cases are not registered in any system. This makes it extremely challenging for general practitioners to know where to refer patients with lipedema.
"We have discussed this with the Norwegian Lymphedema and Lipedema Association (NLLF). The most important focus must be to establish a diagnostic code," emphasizes Skuladottir.
Read about patient experiences with lipedema in the article Kampen for diagnose (external link) (Norwegian article) ("The Fight for a Diagnosis") in Bymag.no, April 4, 2025.
LIPEDEMA
What is lipedema
A chronic condition characterized by abnormal accumulation of fatty tissue, most commonly in the legs, thighs, and hips, but it can also affect the arms.
Diagnosis and Treatment:
- Diagnosed clinically (based on symptoms and physical examination).
- Treatment includes compression therapy, physiotherapy, dietary adjustments, and in some cases, liposuction (fat removal).
- Not considered obesity and does not respond to traditional weight loss methods.
Common Challenges:
- Often misdiagnosed as obesity or lymphedema.
- Many patients feel they are not taken seriously by the healthcare system.
- While lipedema is a recognized condition in several countries, Norway still lacks an official diagnostic code (as of 2025).