Lipoedema Ladies in the UK Needed for Lipoedema Footwear Project

Susan O’Hara is the Brand Principal for LegsLikeMine, LLC.  Based out of Oklahoma in the US, Susan, who has stage 3 lipo-lymphedema,

Susan runs a startup company that is designing footwear especially to cater to the unique needs of women with lipedema, but who still want mainstream and attractive footwear.  Susan also creates social media content in hopes of connecting lipedema ladies with products and clothing that fit our bodies the right way and make us look as great as we feel inside and out.  Visit her on legslikemine.com.  

One of my first memories of shoe shopping with my mother was quite entertaining at the time.  As a five year old, I thought it odd when my mother, a petite and rather slim lady, attempted to put on a pair of, ‘fashion boots.’  When they didn’t zip, my mom yanked the boot off of her foot, yelled, “DAMMIT,” and threw it across the shoe store.  Little did I know I would later experience the same fate of not being able to have boots that fit.  But until then I witness this experience of the boot throwing mother over and over through the years. 

I was able to wear average sized shoes until I hit puberty around age 12 and my feet grew to a size US 13WW / UK 11.  At that time there was no Amazon or internet, so I had to go to a local store called, “After 9 Shoes.”  Here, a guy who looked like an aged and somewhat greasy Elvis Presley, (except he had a large mole on his face) would sell me my one pair of shoes a year for around $100 back in the mid 1980’s.  The shoes weren’t cheap and the experience was not my favorite.  Eventually that store went out of business. I was relegated to hanging on to every pair of shoes I’d bought since age twelve, and when I was lucky enough to visit cities like San Francisco or Las Vegas  with a large gay male population, I would hit the shoe stores and stock up.  Occasionally I would have to have a little scrap with someone who had better plans for the shoes I’d been holding, but I usually came out triumphant.  Sadly, all of the shoes I got in the stores catering to gay men were high heels, and as I aged these hurt my feet (although I did have an AMAZING high heel collection).  I remember saying so many times that I was going to start a shoe company someday.  

Later on, I was relegated to shop at a chain in the US called Payless shoes, where I could occasionally find one or even two pairs in my size, or a size down and squeeze my feet in.  These shoes were always of the lowest quality, manmade materials with no arch support.  My feet hurt constantly when I donned flats from this store, but it was literally all I could find.  As I had children, gained and lost weight, and began showing signs of lipedema and lymphedema, my feet began throbbing and the tops of my feet would swell out of my shoes - I call it ‘puffing.’  And again, I would say that I was going to make shoes for women like me.  

I decided before my surgeries in 2021 that I would contribute to the community by sharing my story online.  I sat up a YouTube channel, FaceBook page, blog, accounts on all the major social media outlets, and I began to share.  And over the next two years, my presence grew daily.  I literally at one point while recovering from surgery was answering 1000+ messages a day.  What I learned is that women in the lipedema community are desperate for information and are underserved in every area of business.  This includes the medical community, fashion, and even footwear.  

I wrote my first book (Jeans on a Beach Day: For the Beautiful Woman Hiding Her Legs) in 2022 and distributed it at the Fat Disorders Resource Society meeting last year in Cleveland.  I immediately made notes of all the other things ladies were asking me about and got to work on my next blogs and book, Aquatherapy for Lipedema, which will come out on March 17, 2023.  I have six more books related to supporting women with lipedema in the works.  I’ve found women have been buying a copy for themselves, copies for friends and family, and bringing extra copies to their medical teams as well.  It’s proven to be very helpful, as there is still very limited information published about lipedema.  Incidentally, I bought many extra copies of my book this last year, and occasionally would get a complaint about a fat shaming doctor from lipedema ladies, to which I would reply by writing a personal note in the book, highlighting pertinent information for medical professionals, and promptly mailing the copy right to the doctor’s front door.  

I decided I would do my part to connect women with products they desperately were asking me personally for, by finding companies that made things in our sizes and modeling the clothes, and then pointing out links to accessories and equipment I found for us using my social media.  I still was unable to find footwear that could accommodate me or my mother, and I desperately wanted a pair of boots to ‘be normal.’  I found a brand that worked for me, and literally bought sandals from this brand, then took them to the shoe repair store nearby to have the straps extended for my mother.  That’s when it dawned on me that I could see about having shoes made because literally no one is catering to us in the marketplace. 

While I have very significant amounts of training a a project management professional and I’ve managed multi million dollar software projects, a year ago, I knew absolutely nothing about making shoes.  So I started my search on YouTube and one of my first hits was with a lady named Susannah Davda, who owns a company called The Shoe Consultant over in the UK.  I emailed her and almost immediately knew she was passionate and experienced enough to help me get the shoes off the ground.  

For a year now, we’ve worked together, adding team members along the way.  I’ve brought on an amazing designer named Jess Good, who has been in the business for more than 20 years, and most recently a Footwear Technologist named Jo Martinez who has significant experience in ensuring that footwear meets the unique needs of special projects, and all involved are wonderfully experienced and connected in the footwear industry and in helping startups.  The entire experience, not only of learning about the footwear design and manufacturing process, but in working with freelance women who are absolutely brilliant has been a highlight of my life work.  

Together we’ve held numerous focus groups with lipedema ladies to gain understanding of challenges we face in footwear, and have designed some lovely calf and mid-height boots that look mainstream, along with some multi occasion loafers that are adaptable to swelling.  We have a five year plan to put out two collections a year and basically generate and entire line of footwear for all occasions any lady would need to have shoes for.  

While what we’ve designed will be patented, unlike many other companies I want competition.  The best thing that could happen is that the industry would realize that 11% of women with lipedema is no laughing matter and they’re missing a huge market opportunity.  Nothing would please me more than to walk into a shoe store (which I’ve long since given up on visiting these days) and find shoes that accommodate my large calves and puffy feet in a range of sizes up to a 15, in colors besides black.  That is my dream is to have the industry begin to see women with lipedema as beautiful, fashionable, and positive models for their products.  

The craziest thing about all this activity is that I decided to retire on disability from a 25 year government job to do this work of passion.  The stress of work at the level I’d climbed to was having a significantly negative impact on my leg health, and I felt like I was constantly being discriminated against there.  Additionally, I knew the government work, while important, wasn’t making the best use of my gifts and passions.  So I retired just two weeks ago to dedicate my work time fully to support ladies with lipedema.  As a woman in this community that is often ignored, I think it is wonderful to have strong, bright, passionate and lovely women out there fighting for all of us.  I’m hoping to see this grass roots movement to support our team continue to grow from here.  

Susan O’Hara, Brand Principal for LegsLikeMine, shows off her upcoming Lipedema Friendly Outfit of the Month (featured at the end of January 2023 on LegslikeMine.com) including a comfortable and cute animal print dress, compression stockings, and her prized David Tate chelsea boots that she was excited to find in her size.