Cloves Syndrome Awareness Day
CLOVES stands for Congenital Lipomatous Overgrowth, Vascular Malformations, Epidermal Nevus, Spinal/Skeletal Anomalies, and it is a rare congenital disorder characterized by a combination of skin, spinal, bone, and/or joint, and vascular abnormalities.
This is an extremely rare disorder that has only been identified in about 200 cases worldwide, and it is due to a mutation in the PIK3CA gene. The sooner the disease is discovered and a proper course of treatment is given, the better the general prognosis.
That is why CLOVES Syndrome Awareness Day was created to raise awareness about this condition. This day is observed annually on August 3rd and helps to educate the public about this condition and its effects on those suffering from it.
The History of CLOVES Syndrome Awareness Day
Although we are unsure of when this holiday was created, it most likely was established by medical organizations, hospitals, or patient advocacy groups to raise awareness about this condition. We will continue to try and research the origins of this holiday and will update this section if we uncover anything new.
Some Important Facts About CLOVES Syndrome Awareness Day
To do our part to raise awareness about CLOVES Syndrome, we thought that we would take a moment to list some of the things that we have learned about this congenital genetic condition. We obtained the following facts from various hospitals across the U.S., and hope that the following points prove educational to everyone reading about this holiday today.
- Symptoms include a fatty mass in the child’s torso, deformities of the blood vessels, and skin abnormalities.
- Other symptoms include deformities or overgrowth of the arms, legs, hands, or feet, and curvature of the spine.
- To diagnose this condition, doctors will obtain a medical and family history of the patient, perform a medical exam, and schedule a battery of tests.
- Some of the tests used to diagnose this condition include ultrasounds, MRI, computed tomography (CT) scans, and X-rays.
- The care team for a child diagnosed with CLOVES Syndrome may include pediatric surgeons, hematologists, nephrologists, neurosurgeons, radiologists, orthopedic surgeons, and plastic surgeons.
Observing CLOVES Syndrome Awareness Day
There are many ways to observe this holiday. Since green is the color associated with CLOVES Syndrome, many people wear green on this day. It is also a good day for people to spread the word about this holiday online using the hashtag #CLOVESSyndromeAwareness on social media. Another way to celebrate this holiday is by donating money to organizations that deal with CLOVES Syndrome and other genetic disorders.