Alexa Ercolano is the Founder, Editor and Writer of The Lymphie Life, an online blog to educate, connect, and support lymphedema patients and advocates across the globe. Alexa has interviewed, researched, and reviewed hundreds of people, products, and innovations in the Lymphedema ecosystem. The Lymphie Life has become a pillar for information, especially for those new to lymphedema.
Ayla and Laura, founders of Pandere Shoes, recently interviewed Alexa Erlocano to learn more about her journey and catch up on her current life.
Thank you both. I always love seeing your faces.
One thing that Laura and have been curious about is hearing about when you were first diagnosed with lymphedema and how how things kind of unfolded for you?
Well, I was born with lymphedema, but I wasn't diagnosed until I was a teenager. So when I was a kid, my parents took me to a bunch of specialists, and no one knew what it was. They thought it was like a bone growth thing or something that was making my ankle bigger.
My mom had a friend who was a plastic surgeon over for dinner one night, and I asked her, “Is there anything you can do to reconstruct my leg and make it normal.” I had started getting teased because I went to an all-girls Catholic school. And I was just miserable. And I was like, anything that can be done to surgically fix my leg? She took one look at it and touched it. She said, "That's all fluid. That's lymphedema. Don't let anyone cut into that.” Her dad had had lymphedema. That's how she knew what it was.
So I ran out to my big gateway desktop computer. I went to Google. And I was looking up lymphedema, and it was all the scary extreme photos and everything. I was 14, and I thought - is this going to be my life? I was really devastated. I went through that mourning process I think a lot of us go through when we first get that diagnosis. I think nowadays, it's a little different in that there's so much out there online now and that that mourning process is maybe a little bit shorter. There is a community and answers and treatment. But before all that was accessible, you're filling in the blanks yourself.
My whole teenage years were very difficult with that because my body image was just in the gutter. I was thinking that my worth was tied around my leg. Maybe if I weighed less, my leg would be smaller. So that of course developed into an eating disorder. It was a lot of resentment towards my leg. Luckily, I live up the street from a really great lymphedema center. So I got in to see them as a teen and did the complete decongestive therapy (CDT) and all of that, and that helped a lot. But I, of course, did not want to wear my garments whatsoever! I was, you know, not compliant until maybe my mid-20s. I finally had a come to Jesus moment. And I was like, if I want to feel better, I have to just wear the damn thing! It was that kind of roller coaster we go through. We're in resentment, we're in denial. We don't want to even acknowledge it, and then gradually, it becomes -- well, this is not going to change. But I can make it a little better to live with if I just do what I'm supposed to!
Part of the story that I'd like to hear you talk about is how you moved from being a patient to being an activist?
I started the blog in 2011. I was a college student in Vermont, and I was trying to find stuff online for young people with lymphedema. There was nothing!
I started the blog just as a very personal shouting out into the void and seeing if anyone was there. And pretty quickly, I got comments, and I got people reaching out to me and responding to it. So it was like, oh, my gosh, there's not only other people who have this but people my age who have it! People who were born with it. It's not just breast cancer-related. It's all kinds of people who have this.
I was very young at the time, so I had no idea what "netiquette" was or what's responsible to put on a blog and what's not. So it was kind of just whatever I felt like putting on there. I didn't really have a concept of how much it could reach people or how far it could go. So, it is very raw and personal for a while.
When I was in high school, I did a fundraiser for Lymphatic Research Foundation. I did a thing at my school where I showed a video about lymphedema. I sent away for it, they sent me the DVD, and I showed it at my school, and I gave a little speech. I didn't disclose that I had lymphedema. But it was kind of that first step of speaking up about it. And I raised like $500 for a jeans day. It was a good motivator for my classmates.
And that, I think, probably planted the seed of - this is something that I could do! So, fast forward to when the blog started. Once I realized I had an audience of people who were also looking for that connection but also wanted to learn tips and tricks and learn about the research, I realized this is a platform that I can really build.
I inadvertently went semi-viral in 2015 because I wrote a piece about this girl in Canada, Isa-Bella Leclaire, and she has Parkes Weber Syndrome. And she contacted me, and I shared her story on my blog. It got picked up by all of these different outlets like People Magazine and Cosmo, all this linking back to my site. It was crazy. She had such a great story, and a great message because she had a really extreme case of lymphedema and one of her legs. It was really body-positive message, and that drew more people in.
I kind of had this big jump in views. And so, I thought now that that's grown, what can I do to sort of maintaining this and provide value back? As I was getting older and going through school and learning more about the proper citing of your research, articles and you know what kind of stuff people really want to know, it evolved into what it is now.
And as you guys know, you meet so many people in the community. You go to events, and you network, and that grows. So that allowed me to meet people like you and meet medical professionals and do interviews about the work that they're doing. It really kind of just evolved into this thing that I wish I could spend more time working on it. But you know, it's definitely a passion project, for sure. But one day, I hope it's a full time thing.
I feel like your blog is one of the main places to go for resources. It's really admirable what you've done.
Thank you. I appreciate that. I feel like I wanted to create what I wish I had when I was 14 years old. What I would have wanted to see. Building it up and creating not just the my own writing on there, but having that resources page and organizing that in a way that's useful to people. I think there's so many people in the lymph-fluencer sphere now. Everybody has like their own kind of role and own thing that they bring to the community.
Well, so what do you envision, after the pandemic is over, now that things are starting to change? What's what's gonna change for you?
For me? Well, I was just telling Ayla before we started, I began a new job with Lympha Press. And so it's lymphedema is now officially my my bread and butter is everything now. It's really exciting. I'm in the marketing department. So it's like kismet. It just felt so perfect.
More blogging, I have to make time to do. And they really care about the patient community, which is what drew me to them. It's broadening my network even further, and I've also been able to bring my contacts into work, and you know, because we do like a thought leadership series every month where we interview medical professionals. I've been able to use those connections, which is great. So very nice to be in the lymphedema world fully now. Before I was working at Johns Hopkins Medicine in their marketing department, which was great, but it wasn't lymphedema.
That does beg the question, though. There's a lot of entrepreneurship in the lymphedema space. And I know that there are a lot of people out there who are working full time, and then also trying to build a brand. Do you mind talking just a little bit about that piece?
Sure. I mean, I'm not, you know, a paragon of multitasking or anything like that. When I first started at Hopkins, like three and a half years ago the amount of posts I put out that year, I think was maybe seven. Whereas the year before, I put out like 30. It really varies a lot depending on my work and taking care of my mental health too, because I get burned out very easily. Then I tend to get avoidant because there's this looming list of things.
But I like to make a lot of lists. I'm very big on having physical paper planners. And I try and schedule out time to write. I think availing yourself to tools like social media schedulers or just trying to engage more on Instagram is a tough one for me because the algorithm will kill you. You have to engage, but I'm trying not on my phone so much. So finding that balance is a constant struggle.
I think that your blog posts are definitely more quality than quantity. I always look for your blogs when they come through.
Yeah, I appreciate you saying that. I've gotten so many really, really nice emails from people around the world that were like, I truly felt like no one could understand me that no one knew what I was going through and finding your blog and finding all these other people through you has changed my life. It's given me hope. And so that really keeps me going. This is something that I should be making time for because it's beyond just me at this point.
One of the things that I notice is that sometimes we can be on the front end of people entering the lymphedema ecosystem. I don't know if that's the right term for it. But what did you call it? The Lymphosphere! We do run into people who are not even aware that they have lymphedema. But everybody has to have shoes, and that brings them to us.
Like to continue the metaphor is like a solar system. We're all in these little planets. And how do we kind of make it a cohesive thing? So it's easy for people to kind of find their way and get their needs met from what everybody's offering.
I guess I had one more question. Just before we wrap up. Talking a little bit about your vision, with your brand. I'm just curious, what does the future look like for you and Lymphie Life?
Well, definitely a Calypso review! But I really like the idea of self publishing something, I'm not sure what that would be or what that would look like. This shelf here is just all lymphie books so I'd love to have my own on there one day. Something like that would be would be really a big goal of mine. That's one of the end goals, for sure, is to have something physical that people can have that I can offer them.
Well, as soon as you get that book written. Let us know, we'll put it on our website!
Oh, thank you. I appreciate that. I really do. You guys are the best. I love what you all do. Most people don't understand how something like a pair of shoes can change your life.
I have cried so many times in a shoe store because I can wear things and it's it sucks. It's so frustrating. I have a twin sister who does not have lymphedema. And she's my number one support. But it's always so hard when we would go together a lot of times to the shoe store, and she'd be trying all these strappy little sandals, and I'm like, well, I guess I'll get these orthopedic, looking things or something that feels good.
Or I am uncomfortable and wear things that aren't going to fit. But the shoes that you all provide our community is just an amazing opportunity for us to feel normal and having shoes that we can comfortably wear look good. It's not like you're making some kind of sacrifice for comfort or style. You get to have both so I really appreciate what you do for all of us. And I really love the shoes. I love my little collection of Pandere shoes. And I've had strangers ask me about them too.
That's wonderful. We're just getting started we have we really have a lot more things to make.
Thank you. And truly, Alexa, what you just said, that keeps us going. Starting a company is hard. Every day you're in the trenches. And when we get those emails that say -- hey, you really made my day I can go to my daughter's wedding. That truly keeps us going. We keep marching because of people like you.
Everybody’s doing something in this lymphesphere!
We're very happy to be in the same solar system with you.
All floating around! Well, the anti gravity would be nice for swelling...
For more information about Alexa Ercolano, please visit The Lymphie Life. #stayelevated
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