Laura Oden, Pandere co-founder and CEO, shares the story of growing up with lymphedema, and how her personal struggles inspired the creation of Pandere Shoes.
Pandere Shoes CEO Laura Oden's Lymphedema Story
Pandere Shoes CEO Laura Oden’s Lymphedema Story
Diagnosis, surgery and lymphedema
My obsession with shoes began in my teens. My mother led the way with a closet full of shoes. The collection included everything from 1970's hippie fashion to glam pumps from her college years. She was a fashionista.
When I was 16, any path following my mother’s footsteps was permanently derailed.
I was diagnosed with melanoma. Late 70's treatment meant having all of my lymph nodes removed. Like many others, surgery stopped the cancer but also started a lifelong struggle with lymphedema, an incurable condition that caused chronic swelling in my right leg and foot.
Lymphedema's no fun for a fashionista
Lymphedema is miserable. Not just physically, but psychologically as well. My lymphedema made it impossible to find cute shoes that fit. Between my teens and 30's, I would often buy shoes one or two sizes too big to accommodate the swelling, but then I would just end up with ill-fitting, uncomfortable shoes that were difficult to walk in and frankly, made me feel miserable. At that time, I didn’t even know that wide shoes or extra wide shoes even existed. There certainly were no wide shoes for swollen feet.
Not being able to find wide shoes that fit my feet impacted my life in unimaginable ways. Aside from inhibiting my mobility and affecting my basic health, I found myself struggling with self-esteem and confidence during critical times in my life.
The search for a solution
I lived my lymphedema life in isolation. I was unaware of the millions of others who shared my struggle. My doctors had little or nothing to offer me. They became a repetitive chorus of “I don’t know what to tell you” or “it doesn’t seem that bad”, or “maybe you can stay off your feet more.”
In the early years of my lymphedema, the conventional wisdom was to prescribe diuretics. Dutifully, and desperately, I took my daily pill to eliminate excess water from my system. I stopped on my own because of the obvious futility of the effort but many years later learned that diuretics are completely contraindicated for lymphedema.
I did not wear compression stockings in the 70's and 80's because they offended my young sense of self. How could I possibly wear those contraptions and feel anything other than mortified? I came to regret this decision, but not until my lymphedema was so debilitating that I feared I might end up unable to walk, or worse, dead.
The darkness before the dawn
I spent two full decades in utter misery until my daughter was born. After an emergency C-section, my lymphedema dramatically worsened. My leg blew up like a blowfish and I had a baby that weighed only two and a half pounds. My mom had died two weeks prior to my daughter’s birth and now I could barely stand up, let alone put on a pair of shoes.
As a new mom, staying off my feet was hardly an option. I was running my own business and taking care of an infant and crying myself to sleep every night. Worst of all, I was silent. I stuffed it down. I womanned up. Or at least until I could fall apart the next night.
Fighting back as best as I could
Having a C-section for a preemie was what finally got me into lymphedema treatment. This was the beginning of a 20-year odyssey of learning to live with lymphedema. The early treatment was not very effective, but at least I did make an effort to wrap compression bandages every day for six months and wear compression stockings.
For me, over-the-counter compression stockings created a terrible sense of frustration. On the one hand, I knew I needed them. On the other hand, most of them cut into the back of my knee like a tourniquet. The pain associated with swelling, not to mention the pain of the stockings cutting off behind the knee, simply cannot be understated. Plus, they just didn’t work very well. At the end of my day my leg still swelled up significantly, even with stockings. It was hard to tell what, if any difference the stockings were making.
I tried everything. I tried 2 stockings on top of each other. These were over the counter 40/50 mmhg. I tried putting sanitary pads inside my stockings to cushion the back of my knee. I tried adding bandages or neoprene braces. I tried an early version pump that we all learned later was disastrous for people with lymphedema and probably antagonized the swelling. I tried anything I could think of to improve the compression. During this period of time, mercifully, my body would still reduce the fluid at night when I went to sleep. Eventually my body lost that ability too.
The turning point
I was working in a healthcare facility. I spoke to doctors and clinicians frequently about my dilemma. Even they had nothing new to suggest. One day, I was invited to a meeting about cancer treatment developments led by doctors from the Mayo Clinic. Afterwards, I tapped on one speaker’s shoulder and asked if he knew about any new developments in lymphedema treatment. The doctor said he had heard that lymph node transplants were being done in Europe.
It took me five years to find and learn more about the surgery that I would ultimately undergo. “Lymph Node Transfer” surgery, plus my religious bandaging three months prior to the surgery and one year after, ultimately turned my situation around. Even without the surgery, one full year of bandaging will provide an enormous amount of relief to anyone!
My next great discoveries
The second thing that turned the tide for me was switching to custom Jobst Elverex stockings. I always wanted higher compression than 40/50 but every fitter told me that I was not a candidate for custom stockings. I was told that custom stockings were only for people who needed a custom shape. Not true. The biggest secret of custom stockings is that they come in much higher compression levels.
My Jobst Elverex Stockings.
For the last 5 years my compression stocking are 49/70 with a special knee insert that protects the back of my knee (g-bye tourniquet) with double panels of silicon dots at the top.
My Tactile Medical Flexitouch Pump
I also use a Tactile Medical Flexitouch pump periodically which really helps reduce tightness when I need some extra help. I often pump more after flying on a plane or a demanding week on my feet.
Between the bandaging, and the surgery, and the high compression stockings, and the pump, I finally had relief for the first time in decades. I saw the bones in my feet for the first time since I was in my early twenties. My life began to normalize. I was not miserable every minute of every day.
Finding strength in the lymphie community
And my journey brought me out of isolation. I learned about Facebook groups that acted like support groups that I could tap into day or night. I had no idea that I was not alone. And once I broke free of my isolation, I found myself intensely motivated to do something for us, to make our lives better.
After discovering how many others were facing the same challenges as me, I grew determined to face the footwear industry myself. Surely we could do better than what was on the market! I envisioned a stylish, expandable shoe that was also comfortable, adjustable in key places, supportive and made with high-quality materials. Wide shoes for swollen feet that didn’t look like granny shoes – imagine that!
Pandere Shoes is born!
In 2016, I took my idea to an Anchorage Startup Weekend, an event where entrepreneurs and businesses come together to brainstorm and pitch ideas. At the event, I met Ayla Rogers and Celia Crossett, who would go on to become my Pandere co-founders. There was an immediate chemistry between Ayla, Celia and I, and we soon began raising funds for a shoe prototype. That was the beginning of Pandere, and the beginning of a new chapter of my life in which, uncomfortable poorly fitting shoes no longer held me back!
Me and my amazing co-founders Celia and Ayla.
I’ve discovered that the right shoes can make all the difference. And the greatest gift for me has been talking to people every day that have the same problems – and helping them find a way out. It’s a deep connection I feel with every customer, and an incredible reward to create shoes that make people feel better. We are changing lives, every day.
Also in Foot Freedom Almanac
Let’s face it, wearing compression can be really hard. Especially if you have a condition like lymphedema or lipedema that causes chronic swelling. Not wearing compression can be far worse! Avoiding or neglecting compression or treatment can put you further down the path of pain or debilitation.
Cara Cruz is a blogger, influencer, and mother. She promotes a body positive message and is a proud #lymphedemawarrior and #lipidemawarrior. Pandere is a big fan and we sat down to talk with Cara about her life and journey.