August 3rd is CLOVES Syndrome Awareness Day!
The CLOVES Syndrome Community (CSC) is an organization that “supports, educates, empowers and improves the lives of those affected by CLOVES Syndrome” and has some great tools and tips for the CLOVES patient community.
Let’s dive in!
What is CLOVES Syndrome?
CLOVES syndrome is a rare disorder characterized by tissue overgrowth and complex vascular anomalies. CLOVES stands for congenital lipomatous overgrowth, vascular malformations, epidermal nevi and scoliosis/skeletal/spinal anomalies.
Some of the most common symptoms of CLOVES syndrome include:
- Fatty masses, located in the back, flanks, axilla, abdomen and buttocks. The skin over the mass is typically covered with a red-pinkish birthmark
- Vascular anomalies: Dilated veins in the chest, upper and lower extremities may cause clot formation and occasionally serious pulmonary embolism
- Abnormal or uneven extremities (arms and legs), large and wide hands or feet, large fingers or toes, and wide space between digits (sandal gap toe)
- Spinal anomalies including scoliosis (curving of the spine), and fatty masses and vessels pushing on the spinal cord and tethered cord (spinal cord fixed by abnormal band)
One of the obstacles of living with CLOVES is the enlargement of hands and feet – which can make buying and wearing shoes a hassle.
Fret not! Here are a list of speciality shoe vendors (curated by the CSC) that can help with this very issue:
- The Shoe that Grows
- Billy Footwear
- And anyone who knows anything about comfortable shoes owns a pair or two of Crocs! Click here to see a video on how to modify your crocs for better comfort, as told by the CLOVES patient community.
Family Assistance Program
The CLOVES Syndrome Community Family Assistance Program provides financial relief to families impacted by CLOVES Syndrome. Its mission is is to alleviate some of the costs associated with medical care, medical-related travel, and other CLOVES-related needs.
Whether you are looking for books, blogs, or more — the CSC has you covered. Click here to dig into the resources CSC has available for coping, connecting, and learning. The more we learn about CLOVES and others who are living with it, the more prepared we are to confront it.