She Has A Rare Disease Called CLOVES Syndrome, And She’s Sharing What Her Life Is Like
Lindsey Johnson Edwards is a PhD student, wife, and dog mom from Texas. She’s also a rare disease patient and advocate living with CLOVES syndrome, and she’s begun sharing her story on social media to help others.
Lindsey is now in her twenties, but she received her first diagnosis of Klippel-Trenaunay syndrome, which was later reclassified as CLOVES syndrome, while she was still in the womb.
At the time, Klippel-Trenaunay syndrome was an umbrella term for various similar diseases. Today, Lindsey is inspiring and educating countless viewers across TikTok about CLOVES syndrome.
According to Boston Children’s Hospital, “Congenital Lipomatous Overgrowth, Vascular Malformations, Epidermal Nevis, Spinal/Skeletal Anomalies/Scoliosis (CLOVES) syndrome is a very rare congenital (present at birth) disorder characterized by a combination of vascular (involving the blood vessels), skin, spinal, and bone or joint abnormalities.”
To date, less than 200 cases of CLOVES syndrome have been identified around the globe. It’s believed the syndrome is caused by mutations in a specific gene known as PIK3CA, which arise spontaneously while a baby is developing in the womb.
Symptoms can range from mild to severe and vary on a case-by-case basis. In order to receive a CLOVES syndrome diagnosis, children will have one or more symptoms, including but not limited to vascular malformations, limb abnormalities, spinal problems, skin abnormalities, and soft and fatty masses on their torso or trunk.
There is currently no cure for CLOVES syndrome. Rather, there are treatments that can help manage or prevent symptoms.
Before Lindsey was even born, there were doubts that she’d survive labor and delivery. However, she did, and her parents became her fierce advocates, finding her doctors and teaching her that all people are special.
In fact, in a recent video on her TikTok account @edwards_linds, Lindsey revealed how it wasn’t until she was in preschool that she realized she was different.
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“It was my second year of preschool, actually, that a little girl came up to me on the first day of preschool and made fun of my hands. She told me that my hands looked like feet, and I remember thinking that she needed glasses,” Lindsey recalled.
Then, she glanced down at her hands, and that represented the first time she ever saw her hands as different.
“Until that point in time, my parents had spent many nights reading books to me about how everyone is different, everyone is special, and no person is the same. And so I just thought of my hands and arms as hands and arms. They weren’t different hands and arms until I was made fun of directly to my face,” she explained.
According to Lindsey, that’s when she started to view herself as “different” and “put the pieces together” regarding her diagnosis.
As a baby, Lindsey saw numerous doctors before she was introduced to a Boston specialist. From there, she would undergo extremely long surgeries every six months or so, during which the specialist would work on her arms, hands, chest, or back.
Later, as an adult, Lindsey continued receiving care in Boston and often had to educate other doctors about her illness. The rarity of her illness made both navigating her medical care and dealing with uneducated or unkind people extremely difficult for her.
Lindsey also didn’t know that CLOVES syndrome was progressive until she began noticing changes in her own body at 22 years old. In addition to it progressing further up her neck and lower into her abdomen and pelvis, she has symptoms that aren’t visible to the eye, like an impacted lymphatic system.
Her growing presence on social media has been well-received by community members, who appreciate Lindsey raising awareness about her rare disorder. She currently has 26,000 followers on TikTok, where she chronicles her life and answers questions about CLOVES syndrome.
In the same TikTok video where Lindsey opened up about the first time she realized she was different, she gave some advice to parents with medically complex children.
“If I could go back and if I could give any advice to parents of medically complex kiddos, especially kiddos that look different, I would say number one, make sure you’re talking to your children about what they’re going through and what they’re processing. Even if you take them to therapy or counseling, make sure you are talking to them as well,” she explained.
“Number two: make sure that doctors and healthcare providers are talking to your child in an age-appropriate way. Make sure that your kiddo has an awareness of what’s going on.”
Lindsey shared how, because no one was telling her why she needed to continue undergoing surgeries, she didn’t want to have surgeries anymore once she entered elementary school.
“It’s because no one talked to me about why we were doing that surgery and why it was important. And I would have handled it better had someone communicated with me,” she said.
Finally, Lindsey claimed the best thing about her childhood was how her sister and her parents didn’t treat her as if she was different.
“If I wanted to do something that I physically couldn’t do or was unsafe for me to do, my dad worked tirelessly to try to figure out a way for me to do what I wanted to do safely,” she noted.
“Try to treat your medically complex kiddo like they’re a kiddo.”
Lindsey’s transparency about her personal journey online, as well as her advocacy for CLOVES syndrome awareness as a whole, has resonated with so many viewers.
“Thank you for teaching us! I love your points!” commented one user.
“You are beautiful. Thank you for giving this advice by sharing your experiences,” wrote another.
More About:Human Interest
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