Physicians & Researchers - Cloves Syndrome Community

This network is a group of 50 patient-led organizations that are accelerating research and driving progress in the fight against rare diseases.


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How old is a patient with CLOVES syndrome (wt)?

From a total of 122 patients with CLOVES syndrome (mean age 7.7 years, range 0-53 years), four patients were diagnosed with Wilms' tumor (WT) by the age of 2. (Peterman et al.) ...

What are the side effects of cloves?

Allergy is another common side effect of cloves, which is again caused by eugenol. Excessive consumption of cloves can thin your blood and increase the risk of bleeding. And it is also contraindicated in breastfeeding, in children under six years of age or in patients with gastrointestinal problems and neurological diseases. ...

What are vascular anomalies in CLOVES syndrome?

Patients with CLOVES syndrome have abnormal lymphatic and venous channels in addition to the skin birthmark. Some patients also suffer from a more aggressive vascular anomaly (Arteriovenous malformation – AVM) around the area of the spinal cord. ...

Can a genetic test help with CLOVES syndrome?

Genetic testing can be very helpful for people with CLOVES syndrome. Having a genetic test can help families and doctors understand treatment options that are already available. Treatments that are currently being tested or may become available in the future may also rely on a person’s genetic test results. ...

Is CLOVES syndrome inherited?

Unlike most genetic conditions, CLOVES syndrome is not inherited. The gene changes that cause CLOVES syndrome are only present in some of a person's cells, and they are not found in that person's parents, siblings, or children. CLOVES syndrome is caused by mutations in the PIK3CA gene. ...

Is exome sequencing a good test for CLOVES syndrome?

Exome sequencing, a comprehensive test that is increasingly common for people with rare conditions, may not be the most effective test for diagnosing CLOVES syndrome. It is very expensive and is typically done using a blood sample. Many families have reported that they had exome sequencing as their first diagnostic test. ...

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