Woman Living with CLOVES Syndrome Documents Life (Exclusive) [Video]

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. …