Patient Stories

Thriving with Lipedema

In March 2021, Kasi shared her personal story of living with Lipedema on Facebook. It resonated widely with so many, and Kasi discovered that many people live with at least one or more complicated medical diagnoses. It became her personal mission to normalize conversations around our personal health so that we can all have more empathy. 

“We are all dealing with heavy things, and we ought to talk about them!” said Kasi.

In her personal blog, Kasi shared some of the things she learned in her first year of diagnosis that we summarized here to help other patients who might be at a similar point in their journey. Her advice is in her own words (This post has been shortened for brevity. You can read the full post here.)

• Very early in my journey and emulating many women I look up to in the Lipedema community, I knew that I wanted to establish an online presence to share my Lipedema journey. With that in mind, ‘thrivingwithlipedema’ became my tagline and the inspiration for sharing my experiences. I started a blog and Instagram page (@thrivingwithlipedema) to share my experiences and help others living with this condition as I have learned so much from others who have done the same. I spend quite a bit of time researching, writing, and engaging with the Lipedema community, and it has proven to be very therapeutic to give back to the community in this way and has, in return, given me back more than I put in.

• I have advocated for my health and formed an incredible medical care team that consists of a primary care physician, dietician, vascular specialist, cardiologist, endocrinologist, and lymphatic/MLD therapist who have all been open and receptive to learning. This resulted in me getting a proper diagnosis and having documentation of Lipedema in my medical records to ensure that I receive the proper coverage and treatment options. I prepare for my medical appointments as if they are business meetings, providing materials in advance where needed, or showing up with printed copies of the latest research and developments, and literature. I have yet to have one of my providers not express appreciation and interest in learning more. Having medical professionals finally hear me and be willing to partner with me has been incredibly validating. It took a great deal of work on my part, but the end results have been worth the effort. 

• I’ve adjusted my lifestyle to include daily conservative therapies, which include wearing compression garments daily, adjusting exercise and activity to prevent unintended injury, learning manual lymphatic drainage and dry brushing techniques, adding in a vibration plate and rebounder trampoline, which I use daily, and other techniques meant to slow the progression of this disorder.

• I have completely altered my diet to reduce added sugar and severely restrict carbohydrates, both of which I believe can trigger an inflammatory response that furthers the progression of Lipedema. Under the care of a nutritionist, I have lost more than 40 pounds of non-Lipedema weight in the last year. This weight loss will be critically important as I approach the next phase- surgery to remove the diseased/fibrotic Lipedema [tissue]. I feel fortunate that I have not had to cut dairy or stick to a more restrictive ketogenic diet, but I focus on lean meats, fresh fruits and vegetables, nuts, dairy, and small portions of whole grains, and that has worked great for me. However, losing weight has only made my Lipedema more visible, painful, and apparent. [Lipedema has been shown to be resistant to dietary and exercise interventions].

• I’ve completed a Functional Capacity Exam (FCE) and a Lymphoscintigraphy procedure, each of which was challenging both physically and mentally, but important building blocks for gaining access to proper coverage for Lipedema. The FCE established that I “suffer from severe limitations and restrictions due to the condition of Lipedema which dramatically affects mobility, strength, endurance, and quality of life.” I can’t explain the validation of finally seeing on paper what I have felt in my body for the past 25+ years as one doctor after another have been puzzled by my health.

• One of the most important pieces of research for our community to date, the Standard of Care for Lipedema in the United States, was published in May 2021, providing more visibility, and learning for medical professionals - paving the way for significant research and treatment development. This document has been a mainstay in my personal arsenal of literature that I carry to every medical appointment and has helped me to not only understand the condition, but influence the full lifestyle changes I’ve needed to adjust to this diagnosis.

• I have become active in several Lipedema communities and connected with hundreds of other women and medical professionals. One of the highlights was being invited as a guest panelist on Lympha Press’s Monthly Lipedema Patient Roundtable in November 2021; this monthly forum has provided me an incredible outlet to connect with leaders in the Lipedema community, to provide support, and share information with one another. 

• I’ve been able to make private and personal connections with women who recognized the symptoms from my posts and realized that they too may have Lipedema (up to11% of women do, so the odds are pretty easy on that one) - How amazing that my efforts to spread awareness are working even within my own network! I have even received many messages over the last year sharing articles, videos, and news that friends wanted to make sure that I saw. Every time that happens, it puts a big smile on my face because it means people are learning the name of this condition! Awareness is a wonderful thing for ALL of us!

• I began exploring Lipedema removal surgery, participating first in an informational group session and subsequently booking a personal consultation with a surgeon. This resulted in the documentation of the surgical plan to remove my Lipedema. Based on that surgeon’s recommendations, I will likely need at least 3 surgeries initially to address my current stage, spaced about 2 or 3 months apart. This stage takes so much work, and ultimately after spending months working with this surgeon, I had to make a difficult decision not to proceed with him as he was not within my insurance network’s plan. They were unwilling to make an exception after multiple appeals. It was heart-wrenching to have to make the decision to restart the entire process with a new surgeon, but I learned so much from this experience.

• I worked through finding a new surgeon within my network and completed the pre-surgery consultation with the surgeon's assistant, which validated that I was a candidate for surgery. Since that time, I have completed 4 life-changing Lipedema removal surgeries with him. It was difficult to pivot to find a new surgeon because there are so few that specialize in Lipedema, and this challenge means months-long waiting lists for patients and a high likelihood of having to travel out of state to find a doctor trained in Lipedema removal surgeries.

• I have navigated this exceptionally difficult journey of having my Lipedema removal surgeries approved as “medically necessary” through my insurance company. Some major insurance companies now cover the surgeries, but they make patients jump through incredibly difficult hoops in order to get approved. I spent more hours working through my insurance approval process than I spent on the Capstone project for my master’s degree- this process is not for the faint of heart.

For tips on how to advocate for yourself, check out the LF Patient Self-Advocacy Guide.