Read more about

CLOVES

Also known as
CLOVES
is a
PROS
condition

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

Stories from the CLOVES community

  • 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

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!

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. 

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

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. 
  • 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.

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