Opsoclonus Myoclonus Syndrome (OMS) is a rare, orphan disease primarily impacting children between the ages of 1-5 years old. OMS is an autoimmune disease suspected to occur when the immune system tries to battle a cancer and gets confused, attacking the brain instead. Left untreated, OMS warriors will likely have deficiencies in speech, physical activities, learning, and other general life skills.
As shown on the graph, based upon the responses from 175 OMS caregivers on an informal, non-scientific survey in January 2014, the median age of OMS onset is 18 months. The survey found onset at all ages from birth throughout adulthood.
- Loss of balance
- Sleep disturbances
Yes, OMS can be misdiagnosed. However, we are encouraged by the data provided from the NORD Patient Reported Natural History Study on OMS. We find that over the years, the likelihood of proper diagnosis is trending favorably so that now, a patient is highly likely to have a proper initial OMS diagnosis.
YES! Responses from a caregiver survey show that 60% of OMS warriors have had a neuroblastoma or other cancer detected, while 40% have not.
As shown on the graph, based upon the data provided from the NORD Patient Reported Natural History Study on OMS, we found that OMS impacts girls more often at 56% versus 44% for boys.
Leading hospitals in the United States to diagnose and treat OMS include:
- Children’s Hospital Los Angeles
- Boston Children’s Hospital
- Children’s Hospital of Philadelphia
- Texas Children’s Hospital
- Seattle Children’s Hospital
- Sloan Kettering New York
Leading hospitals in Europe include:
OMS warriors typically receive a treatment protocol of IvIG, high dose steroids, and chemotherapy.
- The high dose steroids may include ACTH, Dexamethasalone, Prednisolone, or Methylprednisolone.
- The chemotherapy treatment may include Cytoxin, Rituximab, or Ofatumamab.
- The IvIG brand names includes Gammunex, Gammaplex, Privigen, Polygam, Gammaguard, Intragam, Flemmoglobin, and Kiovig.
A survey of OMS caregivers showed that the clear majority of OMS warriors have received IvIG as part of their treatment.
Dr. Michael Pranzatelli maintains a web site at www.omsusa.org.
The OMSLife Foundation maintains a wiki with valuable information that has been collected from OMS caregivers over the years. http:\\wiki.omslife.org.
In Europe, visit the Dancing Eyes Syndrome Support Trust at http://www.dancingeyes.org.uk/