Woman Living with Ultra-Rare Disease Talks ‘Reclaiming’ Her Identity After Spending Life Feeling Like ‘a Diagnosis’ (Exclusive)

• Lindsey Johnson Edwards was born with CLOVES syndrome, later determined to be Klippel-Trenaunay syndrome
• Edwards has navigated a lifetime of medical procedures and monitoring and has embraced her differences, opening up about her experiences on TikTok
• Edwards tells PEOPLE about how she got started on social media and how she’s helping others through sharing her journey

One woman’s dedication to sharing her experience with a rare illness is educating and inspiring creators across TikTok.

Lindsey Johnson Edwards uses the platform to chronicle her journey with Klippel-Trenaunay syndrome. The Mayo Clinic defines it as “a rare disorder found at birth involving problems in the development of certain blood vessels, soft tissues (such as skin and muscles), bones and sometimes the lymphatic system. The main features include a red birthmark, ranging in color from pink to reddish-purple, atypical vein or lymphatic development, and overgrowth of tissues and bones.”

“At the time I was diagnosed in the womb, it was called CLOVES syndrome, which was kind of an umbrella term for a lot of similar diseases,” Edwards tells PEOPLE exclusively. (CLOVES stands for Congenital Lipomatous Overgrowth, Vascular Malformations, Epidermal Nevis, Spinal/Skeletal Anomalies/Scoliosis.) “They could tell on ultrasounds that I had significant overgrowth.”

Without much knowledge around the syndrome at the time, they were unsure of what to expect for their daughter. At times, they weren’t certain she’d survive labor and delivery.

“They weren’t sure that my heart or my lungs would be able to take it,” Edwards shared. “I ended up making out okay and then at that point, everyone sort of shrugged their shoulders and didn’t really know what to do.”

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Edwards’ parents had to get to work as her advocates and began the process of finding physicians who were familiar with the syndrome. For the first few months of her life, she saw countless doctors in her parents’ search for answers. Someone was able to point her mom to a Boston specialist, so she sent him a letter, along with video and photos of Edwards to get his assessment.

“A few weeks later, my mom got a call from his secretary saying he would be in Arizona to play golf in a few weeks and had a layover at the Dallas-Fort Worth Airport. If we could meet him there, he would see him and see what he could do,” she recalls.

The family took advantage of the opportunity, which started a journey of Edwards getting medical care in Boston.

“Every probably six months or so, I would go through very long surgeries. He’d usually work on both arms and hands, or an arm and my chest or my back,” she shares. “I’d usually spend about 18 hours in surgery. He’d try to do as much as he could before I would have to go back to Texas and that’s how my mom learned what Klippel-Trenaunay syndrome was and what my life would look like.”

Edwards’ parents met other families on the same journey. Into adulthood, she’d continue to get care in Boston, having to educate other physicians she met about Klippel-Trenaunay syndrome, which got its own distinction when she was about 12.

“There are five or six specific diseases, overgrowth syndromes, related to the Peak 3 CA gene mutation. Up until that point, my parents had been told my condition wasn’t genetic,” Edwards shares. “There was no genetic component but when they discovered the gene, they re-diagnosed me.”

Growing up with an illness that was still being figured out was difficult for Edwards. Between dealing with the medical complications themselves and navigating people who were unkind or cruel for their lack of understanding was “really difficult,” she remembers.

“I already am aware as a kid that I am an anomaly. I often felt like a little bit of a lab rat because I could tell that most physicians and surgeons aside from my doctors in Boston didn’t really know what to do. They were kind of shooting in the dark most of the time, so I felt like I was this thing to study. I knew they were writing journal articles about me. Then I’d get back to my normal, everyday life and I would go out in public or to school and I was made fun of for looking different and doing things differently,” she says.

Edwards found refuge at home, where “my family never treated me like I was different.”

“My home was a very safe space. That’s the place where I felt normal. Out in the world, I always felt very much abnormal and I used to try to hide my hands and my arms as much as I could. So I’d be in Walmart trying to hide my hands in my pockets and my older sister would constantly pull my arms out of my pockets and my sleeves because she wasn’t embarrassed. She was never embarrassed by me,” Edwards recalls.

“She was proud to be with me, but had no clue what I was dealing with, as someone noticing all the kids staring. Kids would ask their parents what was wrong with me and parents didn’t always handle that well. So there was a lot of layers of difficulty, not only looking different but also having anatomy that very much made me different.”

Edwards’ parents were very committed to advocating for her and teaching her to advocate for herself as she got older.

“When I was growing up and I was younger, we didn’t really talk about hard things. We didn’t talk about mental health, about how being made fun of was affecting me. That wasn’t something we ever discussed … But we very much were problem, solvers and so, we approach things like boots on the ground, never let them see you sweat. We’re just gonna figure it out.”

That said, there were also many joyful moments. One incident she looks back at is her mom swearing off Days of Our Lives while bargaining in prayer for her daughter’s safety the first time Edwards got a heart catheter at 18.

“My mom prayed and told God that she’d quit watching her favorite soap opera, Days of Our Lives, if I didn’t have pulmonary hypertension,” Edwards recalls in a video. “It’s been 10 years and she still hasn’t watched Days of Our Lives.”

Klippel-Trenaunay syndrome is progressive, though that was something Edwards didn’t know herself until she started seeing changes in her body around the age of 22.

“I started seeing really noticeable progress,” she shares. “It’s always been in my upper body. Now it’s started to go further up into my neck and we have noticed some facial abnormalities now. It’s also proceeding lower into my abdomen and pelvis. I’m starting to have more problems with organs in ways I never expected. But that’s a newer thing even physicians didn’t expect. For the longest time, they thought the disease was stagnant where it was.”

There are also the invisible symptoms, which present challenges that people unfamiliar with her condition don’t always understand.

“I have a handicap placard for my car and a handicap license plate because I can’t walk distances, especially in heat. My lymphatic symptom is impacted and doesn’t function like it should, and so if I get too warm or I do too much physical activity — and by too much physical activity, that can mean that I like am typing on my computer for 10 minutes — it causes my hands and arms to start dramatically swelling,” she explains.

“I am constantly worried, every time I actually use this placard and park in a handicap space, that other people are looking at me and judging me and thinking that I don’t need it because I don’t look like most people expect a disabled person to look. With handicap placards, people expect lower extremity mobility aids or wheelchairs. If my lymphatic system malfunctions and I start dramatically swelling, I’ll lose feeling and the ability to use my limbs.”

Edwards has been applauded, both within her own life and by her community on TikTok, for being so knowledgeable about her illness, while also being able to make it easier for other people to recognize what she’s dealing with.

“I wish I didn’t have to understand my disease this well and be able to articulate the disease and my symptoms and how it manifests in my body and what I’m dealing with. I wish I didn’t have to have the ability to explain it so thoroughly but I do because oftentimes my body doesn’t have health complications in ways that physicians expect,” she admits.

“It’s really scary to have to be so well educated on my disease and health complications. It’s really scary as a patient because I know that if they don’t believe me, they don’t listen to me. They’re gonna send me home and I’m gonna get really sick really quickly because, back to the lymphatic system not functioning like it should, I get sepsis really quickly. So I know that if they don’t believe me and they don’t listen to me, I’m gonna go home and I’m gonna get sepsis, and then I’m gonna have to fight for my life, and it’s gonna be really tough to recover.”

It can be difficult to constantly be so concerned when health issues arise, but Edwards finds comfort in practical conversation about some of these issues, while also making space for her feelings about them.

“A lot of what I’m trying to do on my TikTok, is really have those conversations that my family never had. Because I recognized that I really needed someone to validate that it was okay to be upset about the hard things and it was okay to grieve the losses,” she shares.

The bright side of turning to social media, and the motivator for Edwards, is to raise awareness so that the burden is lightened on those who come after her. In ways, it can also help her in her own struggles.

“One of the the positive things about TikTok is that it’s allowed me to explain CLOVES to health care providers that follow me — not just in my area, but across the country. It allows me to educate them on, not just CLOVES, but that health complications might present differently for rare patients in general.”

Edwards’ TikTok journey began when she attempted to have a planned surgical procedure for a third time, only to have it cancelled while in the operating room because of complications from her illness.

“They found the new vascular malformations in my neck and they were blocking the way. There was no way to get around it to do the nerve block, so we had to cancel the procedure in the OR. It was devastating for me,” she recalls.

Not only was Edwards upset for what it would mean for her quality of life to not have this pain management option, but she also had to face the news of her disease progressing.

“For it to progress under my neck is pretty scary because we’ve got other complications to worry about as it goes into the neck and into my head. It was really devastating, and I kept thinking about how there’s no playbook on how to wake up and continue your life the next day after something like that happens, after you get devastating news,” she says.

With that in mind, Edwards documented the day after her surgical letdown. She was barely on TikTok on that point, but considered sharing it with her Instagram following, whom she’d already shared some CLOVES advocacy content with.

“I knew that if I shared this content that I had in my mind on Instagram, I was going to get a lot of questions from family and close friends and I was going to have to talk about it. And I wasn’t in the right place mentally to talk with people about what had happened and what it meant for the disease and how it was progressing,” she recalls.

“So I decided to go to TikTok and that would be my first video, because we didn’t have many people with CLOVES on TikTok. I knew no one on TikTok would really be able to like ask follow-up questions without me providing more details. So I went to this new avenue, thinking this would be a good outlet for me to share what the next day looks like, for me. But I wouldn’t have to answer hard questions that I wasn’t ready to answer.”

She continues, “My first video was documenting trying to go to work the next day even though I was devastated and still had blue marker on my neck from where the surgeon thought he was going to enter. I needed an outlet, but I wanted an outlet where people didn’t know me.”

In a world full of disability content creators who sometimes lean into either positivity or despair, Edwards says that her reality is “in the middle of those two extremes.”

“There are a lot of really hard things that happen in my life. It’s a tough life, but it’s also a really good life and I get to do a lot of really cool things that I love and enjoy. I try to share both sides of things. I try to show myself grieving the losses and the hard things that happen, because I know that it’s helpful for other people to see someone grieving the things that are also happening to them. In an interesting way, it feels like it gives you permission to grieve your losses when you see someone else’s similar losses, so I try to show those hard things to help validate what other people are going through.”

She adds, “That’s what I want my personal life to look like. I want my everyday life to be a balance. I can’t get rid of the hard things. I can’t ignore the hard things. But I can also pursue the good things and the joyful things and try to make sure there’s a balance. Since I want that in my everyday life. I try to also make sure that’s what my content looks like.”

Edwards is grateful for community but also recognizes the dangers of her videos being seen or misunderstood outside of the context of her larger history, both online and medically.

“What I’ve learned is that it’s actually a really bad thing if a video goes viral because as someone with embodied differences, when a video goes viral, people who haven’t been following my story are now seeing my videos. That’s when I usually get comments that are incredibly ableist and harmful and hurtful,” she notes.

“I feel a sense of responsibility for when that happens, because a lot of my following are people with disabilities or rare diseases or who have body differences. I really feel a sense of responsibility to make sure that those comments are handled and addressed.”

Edwards believes social media hasn’t caught up to modern hate, saying that nasty comments regularly skirt by because they don’t violate the terms of service by avoiding “particular slurs.”

“I end up having to block people because the platforms aren’t dealing with the ableist comments and that’s really disappointing,” she says. “You shouldn’t be afraid of a video doing well and going viral. But it’s a scary thing because as someone with embody differences, I know what’s going to happen in the comments when a video does well.”

Through her content, Edwards is also displaying the rich, full life she’s still able to lead with CLOVES, not taking for granted any moment of her journey. She is part of the family advisory counsel for CLOVES Syndrome Community, a non-profit that helps the community fund research and come closer to solutions that improve the quality of life for those living with the rare illness.

Edwards is also married, enjoying the support she gets from her husband and also the times they live in the moment, “demedicalizing” their day-to-day life.

“He picks up medicines from the pharmacy for me. Usually weekly, I go to appointments. We’re having a lot of conversations about what’s happening at my appointments and things like that he’s taking me to scans and imaging in the evenings and that’s a lot of what our life looks like,” she says. “But there are these pockets of our days and our weeks that we can try to de-medicalize and so that’s what we’re working on and trying to find more of, times where we can just enjoy the things that we enjoy.”

In addition to the many journeys she’s facing, Edwards is also pursuing a PhD, hoping to turn her passion into changes for her community.

“Academia is not always disability friendly. I’ve run into a lot of roadblocks in my pursuit of higher education, but this program has been so accommodating. It’s made the PhD process even more enjoyable for me because I’m not having to hurt my body to meet the requirements.”

“They’re helping me preserve my body function as much as possible and my dissertation is on quality of life, which is a topic that’s really important to me as a patient and to the rare disease community overall. I really get to marry my academic interests with my life as a patient and desire to advocate for my community.”

Edwards is grateful for an audience showering her with support every step of the way. “I have developed a community of people that really do know me,” she says. “That’s been a real gift.”