PostedJanuary 28, 2021 · 3 minute read
Lindsay was born with an overgrown leg and foot as well as disfigured toes. At the time, her doctor thought she was just suffering from harmless swelling, but it turned out to be a rare overgrowth disorder.
By Taylor Kane
After 14 years of countless doctor’s appointments and surgeries, Lindsay finally received a diagnosis of CLOVES syndrome. CLOVES is a rare type of PIK3CA-related overgrowth spectrum (PROS) disorder that causes certain parts of the body to grow abnormally large.
When she received her diagnosis, Lindsay felt excited -- an emotion not typically used to describe someone’s reaction upon being diagnosed with a rare disease. But Lindsay explains that she had been searching for an answer to her physical symptoms for her entire life, and was ready to finally meet other people like her.
Growing up, Lindsay certainly had her fair share of hardships. As a child with physical differences, middle and high school were a difficult time for her. “People were always staring,” Lindsay recalls. She remembers the frustration of not being able to wear what she wanted to. “I could only wear one type of tennis shoe, and it was like the ugliest thing in the world,” she says. “It was hard going to school and seeing people who could dress how they wanted to dress.”
Lindsay admits that during her younger years, all she wanted was to fit in with her peers.
“I wanted no attention,” she explains. She says she was able to get through this difficult time in her life with the support of her family and friends, and eventually the CLOVES Syndrome Community, for which she now serves as a Family Advisory Council member.
By the time she entered college, Lindsay had begun to feel more comfortable with having CLOVES. Looking back, she says that during high school she never thought she would be in a romantic relationship and assumed no one would like her because of the way she looked. “Eventually, I have learned to embrace who I am.”
Lindsay has been with her current boyfriend for over two years and explains that they have honest conversations about her disorder and its potential future complications. Knowing what she knows now, she wishes she could tell her younger self that things would eventually fall into place.
Today, it’s been over 10 years since Lindsay received her diagnosis and she’s been able to watch the CLOVES syndrome community grow firsthand.
“I’ve seen the progress with my naked eye,” she marvels. Lindsay also says she is gratified to see more funds directed toward CLOVES research. She is currently enrolled in a clinical trial to try to help find a treatment.
Lindsay is also thrilled about the launch of the PROS research program at AllStripes, which will centralize knowledge about the condition to power multiple future studies. She believes the patient perspective is critical to focusing research efforts, and glad AllStripes helps connect patients with the research process. With more research, Lindsay is confident that accessible and affordable treatments for CLOVES syndrome patients are within reach!
When she attended her first CLOVES Syndrome Community conference in 2016, Lindsay notes there were only around 10 attendees, but that at the most recent conference there were over 100. She loves watching her community grow and come together.
Over the years, Lindsay has had a lot of parents look to her as a positive role model for their children with CLOVES. “It’s nice to be able to be someone who can answer their questions,” she says. She hopes that her example will show others that it is possible to live a happy life with CLOVES syndrome.
Lindsay understands that awareness and advocacy make a huge difference in the rare disease community. A few years ago, she started a blog to help raise awareness of CLOVES syndrome and document her journey with the disease. “It’s such a huge part of me. I find it really important to be involved in the community,” Lindsay says.
If you are a patient, or family member of a patient, with PROS and are interested in contributing medical history to advance research learn more at allstripes.com/PROS.