“Hope is the only thing stronger than fear.” – Robert Ludlum
CLOVES stands for Congenital, Lipomatous, Overgrowth, Vascular Malformation, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis. This is a rare genetic overgrowth syndrome composed of vascular, bone, skin, and spinal abnormalities, and less than 200 individuals have been diagnosed with CLOVES Syndrome worldwide. Many (including myself) went undiagnosed for years, and those eventually diagnosed went quite a while without knowing the cause of their syndrome–it wasn’t until 2012 that a team of researchers and medical professionals at Boston Children’s Hospital discovered the cause to be a mutation in the gene PIK3CA. CLOVES belongs to a category of diseases known as PIK3CA Related Overgrowth Spectrum or “PROS.”
While there continues to be more research to understand and treat this rare syndrome, there is no cure and are very few treatments. Those diagnosed are so uniquely affected that every person needs a customized treatment throughout all stages of their lives. While there is no cure for CLOVES, there are currently several treatments and trials in the works at this time, thanks to an increase in research! Though living with a rare disease is difficult and unpredictable, the individuals diagnosed with CLOVES are strong, brave people full of hope and potential. Learn more about CLOVES here, and if you want to learn more about the cause of this syndrome, take a look at this article.
CLOVES Syndrome Awareness Day is August 3rd every year