Lindsey Johnson Edwards was born with a rare syndrome that has shaped her life in remarkable ways. Her story is one of courage, resilience, and the power of sharing.

Educating and Inspiring through the Tale of a Rare Illness

Diagnosis and Uncertainty

Lindsey was diagnosed with CLOVES syndrome in the womb, an umbrella term for similar diseases. At that time, little was known about the syndrome, and her parents were unsure of what to expect. There were concerns about her survival during labor and delivery. "They weren't sure that my heart or my lungs would be able to take it," Edwards shared. This uncertainty marked the beginning of a long journey of medical exploration.

Medical Journey and Advocacy

Edwards' parents became her advocates, seeking out physicians familiar with the syndrome. From a young age, she saw countless doctors in search of answers. Eventually, she was referred to a specialist in Boston, starting a journey of regular surgeries. "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 recalls. As she grew older, she continued to advocate for herself and educate other physicians about Klippel-Trenaunay syndrome.

Dealing with the Challenges

Growing up with an illness that was still being figured out was tough. Edwards faced both medical complications and the judgment of others. "I already am aware as a kid that I am an anomaly. I often felt like a little bit of a lab rat," she said. But she found refuge at home, where her family never treated her differently. "My home was a very safe space. That’s the place where I felt normal."

Progression and Invisible Symptoms

Klippel-Trenaunay syndrome is progressive, and Edwards started noticing changes around the age of 22. "I started seeing really noticeable progress. 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," she shares. There are also invisible symptoms like lymphatic issues that cause her hands and arms to swell. "I am constantly worried that other people are looking at me and judging me," she explains.

Using TikTok for Advocacy

Edwards' TikTok journey began when a surgical procedure was cancelled due to complications. She decided to document the day after on TikTok, as a way to share her experience without having to answer hard questions immediately. "My first video was documenting trying to go to work the next day even though I was devastated," she recalls. Through TikTok, she has been able to educate healthcare providers and raise awareness about rare diseases.

Balancing Life and Illness

Edwards is married and enjoys moments of de-medicalizing their life. But she also faces the challenges of academia while pursuing a PhD. "Academia is not always disability friendly. I’ve run into a lot of roadblocks," she says. But she is able to marry her academic interests with her life as a patient and advocate.

Community and Responsibility

Edwards is grateful for her community but also recognizes the dangers of her videos being misunderstood. "What I’ve learned is that it’s actually a really bad thing if a video goes viral," she notes. She feels a sense of responsibility to handle negative comments and address ableism.In conclusion, Lindsey Johnson Edwards' story is a testament to the strength of the human spirit and the importance of sharing one's journey. Through her experiences, she is making a difference in the lives of others and showing that with courage and support, anything is possible.