LF Registry: First Look Report

Key findings from the Lipedema Foundation Registry survey

The Lipedema Foundation has launched the LF Registry First Look Report. The First Look features the findings of the Registry survey, highlighting note-worthy insights from patient data. An Executive Summary is also available for download.

Findings include:

  • Long delays between onset and treatment: Although Lipedema may appear early in life, the average age of diagnosis is 48 years old, and women sought medical attention 17 years after first noticing symptoms

  • No standard path to diagnosis: Most participants (59%) had received a diagnosis from one or more health care professionals. Of these, 63% had received a diagnosis from a non-surgeon medical doctor. About a third (32%) had received a diagnosis from a surgeon

  • Consistent pain: Average daily pain for most participants was five on a 10-point pain scale

  • Leg heaviness, fatigue, and easy bruising top symptoms: These symptoms occur with frequency and some severity, with leg heaviness (65%), fatigue (54%), and bruising (50%) reported as being “very severe”

  • Runs in families: Nearly all (94%) of the participants report a family history of Lipedema

Check out these highlights:

 

FIRST SIGNS OFTEN APPEAR AROUND HORMONAL CHANGE

People with Lipedema often first notice symptoms of Lipedema around times of hormonal change. More than half of participants (57%) reported the first signs of Lipedema around puberty (during the teenage years) with peak onset of symptoms between ages 12 and 14.  Another 10% reported first symptoms around pregnancy (4.5%) and menopause (5.5%).

  • Peak onset of age for Lipedema: 12-14 years

  • Average age of seeking medical help: 39.6 years

  • Average age of diagnosis: 48.1 years

PAIN IS CONSISTENT FOR MANY

Average daily pain for most participants was five on a 10-point scale, suggesting that pain can be managed but not ignored. Participants report daily flaring pain at an average of seven on a 10-point scale, suggesting a level of pain capable of interfering with sleep and other activities. Only 4% of participants reported no pain on a typical day.

DAILY LIFE - HALLMARK SYMPTOMS OCCUR WITH FREQUENCY

Lipedema’s hallmark symptoms – leg heaviness, fatigue, easy bruising, sensitivity to touch, and swelling – occur with frequency and some severity for participants. We asked how severe these conditions were for them for the past 30 days, and they responded “very severe” for leg heaviness (65%); fatigue (54%); easy bruising (50%); sensitivity to touch (42%) and swelling (33%).