Hello, and welcome!
People with CLOVES Syndrome, like anyone with a physical difference, get a lot of stares, comments, and questions. There are very few people in the world with CLOVES (less than 3,000, in fact), so the chance of meeting someone with the condition is very low. However you came to scan the QR code on one of our You Seem Curious cards, we are so glad you did!
What is CLOVES Syndrome?
CLOVES is a condition that affects many systems in the body, and is caused by a random mutation in a gene called PIK3CA before birth. It falls under an umbrella of conditions called PIK3CA Related Overgrowth Spectrum (PROS). PIK3CA is a gene that is also associated with some forms of cancer, so research into CLOVES sometimes overlaps with cancer research, even though the two conditions are vastly different.
CLOVES is named after a set of traits that are commonly found in people with the condition.
C is for Congenital, which means something you are born with. All people diagnosed with CLOVES had some symptoms at birth or in utero.
L is for Lipomatous, which means fatty or having to do with fat. Typically most CLOVES patients have a soft fatty mass at birth, often visible on one or both sides of the back and/or abdomen.
O is for Overgrowth, which means people with CLOVES may experience faster growth in one or more areas of their body, like their feet, hands, or faces.
V is for Vascular Malformations. These can range from mild to complex. People with CLOVES have ‘different’ venous, capillary and lymphatic channels (the systems that are responsible for blood flow and the lymph system). Typically capillary, venous, and lymphatic malformations are known as “slow flow” lesions. Some people with CLOVES have fast-flow vascular malformations (known as Arterio-Venous Malformations – AVM) which are rare and aggressive.Capillary malformations are reddish/pinkish birthmarks.
E is for Epidermal Nevus, which is a type of skin lesion that can be flat, tan, or slightly raised. Epidermal nevus are common in the non-CLOVES population, too, but people with CLOVES tend to have nevus that cover a larger area.
S is for Spinal/Skeletal Anomalies or Scoliosis. Some people with CLOVES have tethered spinal cord, vascular malformations in/around their spines and/or other spinal differences. High flow, aggressive spinal lesions (like AVM) can cause serious neurological deficits/paralysis.
There are a variety of signs and symptoms not covered in the CLOVES acronym. These include: wide spaces between the toes or fingers, and asymmetry of body parts, among others. Other skin anomalies include lymphatic vesicles (look like blisters) and other birthmarks. Some people with CLOVES have different orthopedic challenges related to their knees or hips. Some people with CLOVES have different sizes or absence of a kidney.
CLOVES Syndrome Community
We are the foremost patient advocacy organization for people with CLOVES Syndrome. Our mission is to improve the lives of those affected by CLOVES Syndrome through education, support, and research.
Founded in 2009, we provide support to individuals with CLOVES and their families through our thriving online community, communication about scientific advancements and discoveries, direct monetary gifts to help offset the high cost of living with a complex and rare condition, and Betsy’s Camp—an annual opportunity for adults and kids affected by CLOVES alike to connect and relax.
We provide information and resources to our community and beyond to help educate others about CLOVES Syndrome. This includes printed collateral for new families and doctors, two books for children, and this very website.
Finally, we participate in and promote scientific research to assist in the development of a complete understanding of this condition. We do this though our network, and through monetary gifts to researchers, when possible.
We are a tiny and mighty organization, striving to help people with one of the world’s rarest conditions. If you’d like to help make a positive difference, we would welcome your one-time or recurring gift. Even a small amount can make a big difference.
Thank you for taking the time to read and learn! 🍀💚
Are you a corporate leader looking to make an impact while reducing your company’s tax burden? Email [email protected] to discuss becoming a sponsor. Your support will ensure CLOVES Syndrome Community can continue to improve the lives of those affected by CLOVES for another fifteen years (or more!)