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Don’t fight CLOVES syndrome alone.
Find your community on the free RareGuru App.CLOVES syndrome is a rare condition that is primarily characterized by congenital overgrowth of fatty tissue; malformations of the vascular system (the vessels that carry blood and lymph throughout the body); epidermal nevi; and spinal or skeletal abnormalities. Other signs and symptoms may include disproportionate fat distribution, overgrowth of the extremities (arms and legs), skin abnormalities and kidney problems such as an unusually small or absent kidney. The severity of the condition and the associated signs and symptoms vary significantly from person to person. CLOVES syndrome is caused by somatic mutations in the PIK3CA gene. Because these mutations do not affect egg or sperm cells, the condition is not passed on from parent to child. Treatment is based on the signs and symptoms present in each person.
Source: GARD Last updated on 05-01-20
Treatment for CLOVES syndrome involves addressing each symptom or complication and improving quality of life (palliative care). There is currently no cure. Palliative care aims to relieve symptoms caused by masses and minimize disease progression and disability. Management is very individualized because symptoms can vary in severity and body location for each person. Follow-up with various specialists is recommended every 6 months until the end of puberty, to assess for overgrowth and complications.
Medical treatment may include embolization and surgical removal of masses, especially those that are large, deep, or in the spinal region. Sclerotherapy may be used in adults to lessen pain and reduce the size of vascular and lymphatic malformations.
Orthopedic and neurosurgical checkups with possible surgical intervention are needed to reduce complications from overgrowth. Surveillance of hands, feet, and limb abnormalities is important so surgery can be done promptly to minimize limb disfigurement and loss of function. Because there is increased risk of tumor growth in people with overgrowth syndromes, people with CLOVES syndrome should have surveillance for tumors and have masses assessed.
In general, the earlier surveillance and intervention are started, the better the outcome.
Last updated on 05-01-20
The CLOVES Syndrome Community offers an information page on CLOVES syndrome. Please click on the link to access this resource.
Last updated on 04-27-20
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