CLOVES Syndrome

CLOVES syndrome stands for congenital lipomatous (fatty) overgrowth, vascular malformations, epidermal nevi and scoliosis/skeletal/spinal anomalies. It is a rare condition that causes too much growth of fatty tissue in the body. It can also cause the blood vessels and lymph nodes to be formed in an unusual way. People with this syndrome also might have spinal or skeletal problems, or fat distributed in an unusual way around their body.

CLOVES syndrome is a congenital disease, which means that it is present in someone from the time they are born.

The symptoms of CLOVES syndrome can vary a lot from person to person. Doctors and scientists aren’t sure what causes the symptoms to appear in some people and not others. Common symptoms include:

• Hemihypertorphy [HEH-mee-HY-pur-TRO-fee]. CLOVES syndrome can cause one side of the body to grow more than the other. This symptom appears in all people with this syndrome.
• Lipoma [lie-POH-muh]. A lipoma is a benign (noncancerous) tumor that forms between the skin and the muscle. Your child may have many lipomas, most are found on the upper body and buttocks area. They are not typically painful. This symptom shows up in about 3 to 8 of every 10 people with CLOVES syndrome.
• Lower limb asymmetry. People with CLOVES syndrome might have legs that are different lengths or which have different levels of muscle mass. This symptom occurs in less than 1 in 3 people with CLOVES syndrome.
• Renal hypoplasia and aplasia. Renal hypoplasia [HY-poh-PLAY-zuh] is when one or both of the kidneys don’t grow big enough. Aplasia [uh-PLAY-zuh] means that one or both kidneys don’t grow at all. This symptom occurs in less than 1 in 3 people with CLOVES syndrome. 
• Scoliosis [SCO-lee-OH-sis]. Scoliosis is a condition that makes the bones of the spine bend and twist on each other. If a person has scoliosis, their backbone will curve to the side. This symptom occurs in less than 1 in 3 people with CLOVES syndrome.
• Spinal dysraphism [DIS-rah-FIZM]. People with CLOVES syndrome have spinal cords that sometimes don’t develop the right way, which can cause problems with the nervous system. These symptom occurs in less than 1 in 3 people with CLOVES syndrome.
• Skin conditions or birthmarks: patches of pink or purplish skin coloration (port-wine stains), or patches of slightly raised light-brown coloration (epidermal nevus), prominent veins, skin blisters, moles.

Other, rarer symptoms, include:

• Abnormality of cardiovascular system morphology [mor-FAWL-uh-JEE].
• Cranial [KRAY-nee-UHL] hyperostosis [HY-pur-oh-STOW-sis].
• Facial asymmetry.

You should talk to your doctor if your child shows signs or symptoms of CLOVES syndrome. Even though this is a rare disease, these symptoms can also be a sign of another problem that your child should be tested for. The sooner that your doctor can confirm the disease, the better the chance for your child to do well with treatment.

CLOVES syndrome is caused by a mutation in your child’s genes, the code that determines the parts of the body and how they work. People with CLOVES syndrome have a mutation in a specific gene that causes the symptoms of this disorder.

Some genetic disorders are caused by mutated genes that can be passed on to a child by the parents, but CLOVES syndrome is not passed on by the parents.

Your child’s doctor can diagnose CLOVES syndrome by doing a physical exam for the symptoms of this disease. If your doctor thinks your child might have this syndrome, they might order a genetic test to look for the mutation that causes the disease.

CLOVES syndrome is an extremely rare disease, and if your child has only a few of the symptoms, it is possible that they might have a more common disorder or group of problems. Your doctor will talk to you about testing for these problems as well.

Although there is no cure for CLOVES syndrome, there are many treatments your doctor might recommend to help improve your child’s quality of life if they have this disease. Some of these include:

• Embolization [EM-buh-liz-AY-shun]. In this procedure, a doctor or surgeon cuts off the blood flow to a certain part of the body that is growing too big, like a fatty tumor.
• Sclerotherapy [SKLEH-row-THER-uh-PEE]. Your child’s doctor might inject a solution into certain veins to stop the growth of those veins and help blood flow to healthy ones.

If your child has CLOVES syndrome, your doctor might recommend that your child have checkup appointments with specialists every six months until the end of puberty.

CLOVES syndrome is a congenital disease, which means that it is present in people from the time they are born. There is no way to prevent it. CLOVES syndrome is caused by a mutation in your child’s genes, but this mutation is not passed on by the parents, so there is no way to screen for the disease.

Cloves syndrome community: http://www.clovessyndrome.org/

Cloves contact registry: http://www.clovessyndrome.org/cloves-contact-registry

Cloves syndrome foundation: https://www.facebook.com/clovesfoundation/

CLOVES syndrome is a rare genetic disorder that causes some parts of the body to grow faster or differently than expected. People with this syndrome can have one side of their body grow larger than the other, and also have symptoms like fatty tumors and scoliosis.