facebook  twitter   instagram  youtube

Learn

WHAT IS OMS?

Opsoclonus Myoclonus Syndrome (OMS) is a rare auto-immune disorder that attacks the central nervous system primarily in infants and toddlers.  It is an extremely rare condition, affecting as few as 1 in 10,000,000 people per year.  The sympptoms include  rapid eye movement, speech impairment, loss of balance and sleep disturbances.

Left undiagnosed, the child will lose the capacity to walk, talk, or do most tasks that toddlers can achieve.   While there is no known cure, researchers are zeroing in on treatments that can consistently stabilize the disease.  This site is created to enhance awareness of the disease and educate families who have a child suffering from OMS. 

The disease is characterized by an unsteady, trembling gait, myoclonus (brief, shock-like muscle spasms), and opsoclonus (irregular, rapid eye movements). Other symptoms may include difficulty speaking, poorly articulated speech, or an inability to speak. A decrease in muscle tone, lethargy, irritability, and malaise (a vague feeling of bodily discomfort) may also be present. Opsoclonus myoclonus may occur in association with tumors or viral infections.

Treatment for opsoclonus myoclonus may include corticosteroids or ACTH (adrenocorticotropic hormone). In cases where there is a tumor present, treatment such as chemotherapy, surgery, or radiation may be required. Treatment can exceed millions of dollars a year per child. Delayed diagnosis and treatment can result in brain injury.

OMS is not fatal. Most children enter remission within a few years, but early diagnosis and treatment is crucial to the best outcome. 

Across the US, the wait-time to see a pediatric neurologist can be as long as six months. In that time, an OMS patient may have lost their ability to walk or talk completely. Our goal is to raise awareness about, and funding for, pediatric neurology programs, education, specialists and treatment.

This year our mission is to raise funds for Children's Hospital Los Angeles, specifically their Division of Neurology.