CLOVES syndrome is a rare congenital (present at birth) disease that affects the blood and lymphatic vessels, spine, bones/joints, skin and sometimes internal organs. It’s estimated that only 150 children have been diagnosed with CLOVES syndrome so far. Nemours has one of a few of pediatric hospitals in the country equipped to treat this complex condition with life- and limb-saving interventional radiology procedures.
About CLOVES Syndrome
CLOVES is a recently described nonhereditary genetic disorder named for a combination of conditions that make up the syndrome.
The acronym "CLOVES" stands for:
- Congenital Lipomatous Overgrowth (fatty tissue masses or tumors present at birth)
- Vascular anomalies (problems with lymph and blood vessels)
- Epidermal nevi (skin lesions)
- Spinal/skeletal anomalies (scoliosis, tethered cord)
Symptoms of CLOVES Syndrome
CLOVES syndrome symptoms vary widely in combination and severity. In addition to large visual fatty tissue masses on the abdomen, backside, underarms and/or flank (sides), CLOVES symptoms can also include:
- abnormal extremities (large, wide hands and feet, unusual spacing between toes and fingers)
- dilated veins (chest and extremities)
- birthmarks (raised, red or brown areas, port wine stains)
- spinal curvature (scoliosis) or tethered cord (spinal cord attachment to the spinal column)
- kidney problems (unusual size, asymmetry, Wilms tumor)
- intestinal problems (bleeding)
- asymmetric growth (one side grows faster than the other, such as arms and leg, head)
Diagnosing CLOVES in Children
Generally visually diagnosed at birth, CLOVES syndrome is sometimes mistaken as Klippel-Trenaunay syndrome (KTS) or Proteus syndrome. This is why careful examination and advanced imaging (MRI, CT scan, ultrasound) may be necessary to confirm a CLOVES diagnosis. Fetal diagnosis (while a baby is still in the womb) is also possible.
How CLOVES Syndrome Is Treated
There is no "cure" for the syndrome, but the conditions and symptoms of CLOVES can be treated by a team of pediatric specialists.
Some treatments include:
- interventional radiology procedures (shrink tumors, repair lymph and blood vessel malformations)
- surgery (general, urology, gastroenterology, thoracic)
- orthopedic procedures (correct spine, bone and joint problems)
- neurosurgery (repair tethered spinal cord, brain and craniofacial anomalies)
- rehabilitation therapies (physical, occupational, speech and language)