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Pearls, Fitness, and Community: Lipedema Awareness Month Interview

Pearls, Fitness, and Community: Lipedema Awareness Month Interview

Pattie Cornute, founder of Lipedema Fitness from Saratoga Springs, NY, shares her journey living with stage 3 lipolymphedema, the development of lymphedema in late-stage lipedema. An estimated 17 million Americans live with lipedema, causing pain, swelling, and decreased mobility. Faced with this challenge, Pattie courageously leveraged fitness to regain her strength, driven by a crucial objective: the ability to help herself in case of a fall, a common concern for those living with late-stage lipedema. From her empowering Lipedema Awareness Pearls Campaign to organizing the Annual Lipedema Triathlon, Pattie is unwavering in her commitment to raising awareness in June for Lipedema Awareness Month and beyond.

What was your journey to diagnosis?

Growing up, I was always larger but very active, and it didn't bother me much until high school, when I realized my shape started to look different from my classmates. In college, I walked a lot and lost weight, but my legs remained several sizes larger compared to my upper body. I couldn't understand why. I spoke to my doctor and went through several years of tests and inconclusive results. It wasn't until after the birth of my daughter that my legs really changed shape, and I Googled "big legs" out of frustration and found a blog by Patricia Washburn in 2007 that I finally discovered lipedema and realized it described my condition perfectly. I printed out all the information and returned to my doctor, who basically tossed her hands up, stating I needed to find a specialist. I didn’t let that stop me. I remembered reading in the blog that I could search for a therapist near me trained by the Dr. Vodder School. The Certified Lymphedema Therapist (CLT) diagnosed me with stage 3 lipolymphedema within minutes of seeing me. Finally, having a diagnosis was a relief after years of uncertainty and searching for answers. When I had a name for what I was experiencing, it brought a sense of relief and validation. It was a turning point in my journey.

How was your experience with treatment options for lipolymphedema?

I began complete decongestive therapy (CDT), which included manual lymphatic drainage (MLD) and wrapping my legs in bandages. I had to learn to rewrap the bandages myself, and finding suitable shoes while being bandaged was a struggle. Initially, I had doubts about the effectiveness of the treatment, especially the lymphatic drainage massages that were part of the therapy. The massages were so light that it was hard to believe they would make a difference. However, after only my first session, there was already a reduction in my leg measurements. That was a significant indicator that the treatment was indeed working. Over time, my perspective shifted as I became more aware of how my body responded to the treatment. I realized that the loosening of the bandages and the need to rewrap myself was a positive sign that my legs were shrinking and excess fluid was being eliminated. It was a learning process, but it brought reassurance and motivation to continue with the treatment. When the measurement reductions tapered off, I was fitted for graduated compression to help prevent the edema from returning.

What inspired you to launch Lipedema Fitness?

After my diagnosis, I was advised to wear my compression, keep my legs elevated and avoid the heat. Interestingly, I was initially told that nutrition and exercise wouldn't impact the lipedema tissue. Lipedema tissue is not like regular fat, and it doesn’t respond to traditional methods. I was even told that exercise could make my symptoms worse. At the time, I was an avid gym goer, but this advice led me to become less physically active and more sedentary out of fear of progressing, spending most of my time at home with my legs elevated to help with swelling. However, after five years of limited physical activity, my fear for my future health pushed me to make a change. I started seeking ways to train again, guided by my husband, Bob, a CrossFit trainer and martial artist. This shift in perspective made me realize the potential benefits of modified CrossFit in managing my condition. When done carefully and in consultation with professionals, I found that the movements actually had a positive impact on managing my lipolymphedema. It helped rebuild my core strength, which improved my mobility, balance, and overall physical and mental well-being. It was a game-changer for me, and I'm grateful I took that leap of faith.

Was there a time when managing treatment affected your professional life?

Absolutely, I was concerned about finding a job where I wouldn't face bias or discrimination during the interview process. I questioned how I would be perceived visually by potential employers. As I climbed a huge flight of stairs to reach one of the interview locations, I found myself out of breath and in immense pain. It made me doubt whether I could secure the job considering how challenging that simple task was for me. I was offered the job, and though I was excited to join the team, I realized the office did not have a parking lot, so I would have to park a couple of blocks away and walk. Whenever I needed to go anywhere, it involved going up and down those stairs I dreaded in the interview process. I decided to shift my mindset. I started wearing sneakers, putting on headphones, and listening to music during my commute. It was about changing my perspective, and it worked. I started going up one set, then down another, and would do laps during lunchtime to build my stamina. This approach played a significant role in my physical progress, and I was excited to do more. That is when I first heard about the concept of a virtual event from LE&RN, and I signed up to participate in the Run/Walk to Fight Lymphatic Diseases. This experience planted the seed for launching the Lipedema Triathlon, a virtual event promoting ability diversity and the importance of movement for Lipedema Awareness Month in June. We celebrated our eighth annual event this year!

Why are wearing pearls a symbol for your recent social media campaign for Lipedema Awareness Month?

Lipedema nodules can feel like pearls or rice under your skin, and sometimes they can even be larger and harder, similar to touching a bean bag. We can experience extreme pain when these nodules are pressed on. An ultrasound or having our blood pressure taken can be so simple for most people but can be agonizing experiences for us. The excruciating pain endured during these procedures is exacerbated by the fact that the technician often remains unaware of our suffering and desperation for them to end. This year I thought we should all wear pearls (or beaded necklaces) for selfies on social media as a nod to what our nodules feel like. I am always trying to think of creative ways to share what living with lipedema is like, to hopefully spread awareness, reach those who do not know they have the condition, and enhance the support and care extended to us.