CLOVES syndrome is a rare nonhereditary condition that belongs to a range of overgrowth syndromes collectively known as PIK3CA-related overgrowth spectrum (PROS), caused by pathogenic variants in the PIK3CA gene. CLOVES is named for its particular features: congenital lipomatous (fatty) overgrowth, vascular anomalies, epidermal nevi and scoliosis/skeletal/spinal anomalies. CLOVES-related symptoms may be mild or severe, but are evident at birth.

PROS syndromes are lifelong, and can be associated with other health problems that make daily life difficult. Diagnosis of CLOVES is typically made at birth based on physical signs and symptoms, though confirmation can be made with molecular genetic testing for the PIK3CA variation. Prenatal genetic testing may be possible for pregnancies identified by ultrasound imaging as at risk of PROS. Not all infants with CLOVES will have all signs and symptoms, but will have some combination of the following: fatty growths covered with a red-pinkish birthmark, vascular anomalies, large, unevenly sized, and/or wide hands or feet, scoliosis, kidney anomalies, and asymmetric face and head. Treatment for CLOVES is largely symptom-specific treatments, and likely includes surgery. Medical therapy with sirolimus, an immunosuppressive used to prevent rejection of a kidney transplant, has demonstrated some success in helping patients with PROS.

Some common questions about CLOVES

What are the symptoms of CLOVES?

• Soft fatty masses located in the back, flanks, armpit, abdomen and buttocks
• Blood clots and occasionally serious pulmonary embolism
• Large wide hands or feet
• Wide space between fingers/toes and uneven size of extremities
• Scoliosis
• Skin birthmarks
• Kidney anomalies

What causes CLOVES?

Like other PROS conditions, CLOVES is caused by mosaic variations in the PIK3CA gene resulting in anomalies in the soft tissue, blood vessels, bone and internal organs. “Mosaic variations” means that the genetic variants that cause CLOVES are found in some cells of the body, but not in others. 

How many people get CLOVES?

According to Boston Children’s Hospital, fewer than 200 cases of CLOVES have been identified worldwide.

Read more about CLOVES

• CLOVES (NORD)
• CLOVES (NIH)
• CLOVES (Boston Children’s Hospital)

Stories from the CLOVES community

• “The Road Ahead is Going to Be Difficult, But You Are Equipped for It”
  Lindsey was prenatally misdiagnosed with Klippel-Trenaunay syndrome (KTS), but was later diagnosed with CLOVES syndrome, another PROS condition.

• “After Victor Was Diagnosed With CLOVES and MCAP, Jenny Decided to Focus on the Things He Can Do”
  After Jenny’s son, Victor, was born by emergency C-section, he had an enlarged cheek, which doctors initially dismissed as birth trauma. He was later diagnosed with CLOVES at 2 months old. 

• “Meet Melody”
  Melody, a college student, describes feeling different — and her challenges being bullied — because of her CLOVES diagnosis

• “Being Born with CLOVES Syndrome”
  The parents of Emaleigh Blankenship describe discovering that one of their twins had unusual hand-shaped feet while in utero

• “One In A Million Boy With CLOVES Syndrome”
  Victor Padilla was born with the right side of his face heavily swollen, a symptom of his CLOVES diagnosis. 
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Hashtags to follow include #ClovesSyndrome and #ClovesAwarenessDay

‍Are you a member of the CLOVES community with a resource to add to our list? Email us at content@allstripes.com!
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CLOVES patient advocacy groups

• Cloves Syndrome Community (an AllStripes patient advocacy group partner)
  CSC was founded in 2009 when the mother of a child with CLOVES syndrome discovered there were no existing resources for families like hers. CSC convenes the CLOVES community for medical and family conferences, publishes children’s books and funds medical research. 

• Cloves Syndrome Foundation
  A 501(c)3 not-for-profit organization geared toward fundraising for overgrowth research. More information and events can best be found on their Facebook page.

Ways to get involved 

• ClinicalTrials.gov
  ClinicalTrials.gov is an online resource from the National Institutes of Health (NIH) that provides access to information about clinical studies on a wide range of conditions.

• Orphanet
  Orphanet is an online portal that provides access to information related to rare diseases for both patients and medical professionals in order to improve the diagnostic processes and treatments

• Rare as One Network
  The Rare as One Network, part of the Chan Zuckerberg Initiative, allows patients and family to share their thoughts in (paid) user studies in order to support the rare disease community.

• AllStripes
  AllStripes is a Public Benefit Corporation on a mission to unlock new treatments for people affected by rare disease. Learn more about us by visiting our FAQs page. 

CLOVES in the media

• “I try and avoid doom and gloom for the kids, says Meath mum as DIY SOS transforms home” (4/17/2022)
  Jen Parsons, who has CLOVES syndrome, and is the mother to two children with special needs, was given a home makeover on DIY SOS, a British television series.

• “FDA Grants Accelerated Approval to Alpelisib in PIK3CA-Related Overgrowth Spectrum” (4/9/2022)
  The FDA has granted accelerated approval to alepelisib (Vijoice) for adult and pediatric patients 2 years or older with severe manifestations of PIK3CA-related overgrowth spectrum (PROS).

• “Arkansas boy with rare condition writes book about his life to prevent bullying” (6/22/2021)
  Alex, a young boy with CLOVES, published a book called “One Shot: A Story Of Bullying” about his life that he hopes will help other kids like him going through bullying.

• “Georgia girl with rare genetic disorder surprised with donated playground” (7/2/2020)
  Arria Ingram was born with an aggressive case of CLOVES, resulting in two amputations was gifted a playground by a tree removal service hired by the family. 

• “11-Year-Old With CLOVES Syndrome Hangs Out With The Titans” (8/4/2018)
  In 2018, the Tennessee Titans football team invited Kayden, a boy with CLOVES, to spend the day with them at the team's walk-through practice.

CLOVES Resources

• Understanding PROS
  A specialized website featuring detailed information on PROS conditions, as well as educational, downloadable resources on PROS conditions for affected families and medical professionals. 

• Cloves Syndrome Community Resources
  This page offers a number of small grants and financial relief programs for families affected by CLOVES.

• Health Insurance Marketplace
  If you do not currently have health insurance and live in the U.S., this link will help you determine if you are eligible for Medicaid or CHIP (Children’s Health Insurance Program). 

Related vascular conditions

• Klippel-Trenaunay syndrome (KTS)
  Another condition that falls under the PROS umbrella, KTS is caused by a pathogenic variant in primitive cells that form a limb (typically, but not always, a lower limb) that becomes blood and lymphatic vessels, fat, and bones

• Proteus syndrome
  Proteus syndrome is a rare disorder characterized by disorganized overgrowth of various tissues of the body caused by a variation in a gene called AKT1.