By Kathy Doherty
If you follow the Lipedema Foundation on social media, you’ve probably noticed that we’ve been posting key findings from the LF Registry First Look report during the past two months. This report analyzes participant data from the Registry, which we launched in March 2019 to learn more about patient experiences with Lipedema.
Because there is a lot of data to digest in the First Look report, we published each finding on social media (Facebook, Instagram, LinkedIn, and Twitter) as a stand-alone post. This allowed us to see which findings resonated with our community, as well as listen and learn from comments on the posts. It’s one thing to look at the data – it’s another to see how our community reacts to the information.
As a Lipedema patient, I had anticipated that topics such as pain, paths to diagnosis and symptoms would create a lot of conversation, as these are issues that I personally struggle with or wish I had a better handle on. While these posts did receive a lot of attention, they didn’t generate nearly as much conversation as some of the other posts.
Across all of LF’s social media channels, four posts in particular stood out:
Age when Lipedema starts: About 57% of survey participants reported that they first noticed Lipedema symptoms between the ages of 10 and 19 years – and the majority of social media commenters agreed with that finding. Some noticed their bodies were different from other girls’ as early as 7 and 8 years of age, while others became aware during their teen years. Changes in shape and body descriptions ranged from “extra big thighs with pads of fat at [the] knees” to a “pancake butt from puberty…with bumps showing at age 14.” The struggle with weight gain was best articulated by another commenter who mentioned that "her mother was sure she could change [her shape] through exercise” when she was in seventh grade.
Comorbidities that co-exist with Lipedema: In the First Look report, we identified at least 14 self-reported conditions that may accompany Lipedema, including obesity. Many of these conditions involve immune, vascular and connective tissue issues. For many in our community, this was a real eye opener. Anemia and high blood pressure were among the comorbidities most commented on. One commenter was surprised to see high blood pressure cited as a condition by 26% of the participants. Another wondered if the high blood pressure finding was possibly inaccurate, as blood pressure cuffs aren’t always large enough to accommodate women with heavy arms, and therefore sometimes the readings are off.
The comorbidities post raised other questions. One commenter mentioned that if participants are obese, how do they know that their comorbidities are due to Lipedema and not being overweight? Another wrote that comorbidities might be due to a poor diet. It is exciting to see comments that encourage debate and foster discussion in research and the community.
Family history: While no single gene has been confirmed to affect the risk of developing Lipedema, studies indicate that patients report a family history of Lipedema at high rates. The First Look report concurs with those findings. Almost half (49%) of the participants suspect that they have one parent with Lipedema and 11.6% have a parent who was diagnosed with Lipedema. Most commenters agreed that Lipedema tends to run in their families. Many pointed to grandmothers, mothers, sisters, aunts, nieces and cousins with the condition, although a few mentioned they were the only one in their family. Others commented that they think they inherited it from their paternal grandmothers.
One interesting finding was that 6% of respondents suspected the presence of Lipedema in at least one of their blood-related male siblings. This finding reveals a greater prevalence of Lipedema-like features in males than previously reported and warrants further investigation.
Lipedema affects more than arms and legs: Lipedema is typically characterized by a symmetric build-up of fat in the legs and arms, but the First Look report found that Lipedema-like fat and texture can appear throughout the body. Our community agreed, with some noting that they believe they have it on their scalp, chins, and stomachs, among other areas of the body. One woman mentioned that this First Look finding makes her feel better, as she suspected she had Lipedema in her stomach for a long time and another said that, as she is getting older, she believes Lipedema is spreading throughout her body.
Others expressed frustration that often healthcare professionals are not aware that Lipedema can be found beyond arms and legs. (It’s important to note that, while participants were able to identify Lipedema-like texture in areas of the body not typically associated with Lipedema, such as the abdomen, it is much more common in the hips and legs).
One of the biggest challenges facing our community is getting healthcare professionals to recognize and understand that Lipedema is a common disorder – and that sentiment was echoed throughout the commentary in the social media posts. There are currently no diagnostic tests for Lipedema and the full range of treatments is unknown. That’s why the Lipedema Foundation is on a mission to fund research to define, diagnose and develop treatments for Lipedema.
While the First Look report is a great start, there is much more work to be done. The experiences of women with Lipedema suggest new hypotheses for researchers to explore and provide context to current and future studies. For a deeper dive into the full16-page report, download a copy from our website. In addition to the findings we’ve shared in this blog, the report features data on diagnosis and staging, symptoms, daily life and treatments. We’d love to hear your thoughts – and incorporate your suggestions - as we continue to grow the LF Registry.
If you haven’t already done so, please join the LF Registry and encourage family and friends – with or without Lipedema – to do so as well. By joining the Registry, you become part of a global community working to improve the outcomes of life for people with Lipedema.