What is OMS/OMAS?
Opsoclonus Myoclonus (Ataxia) Syndrome or OM(A)S is a rare, orphan disease primarily impacting children between the ages of 1-5 years old. OM(A)S 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.
What is the average age of OMS warriors?
Based upon responses from 123 patients in our OMS Patient Reported Registry, we found the median age of OMS onset is 18 months.
What are some of the symptoms of OM(A)S?
As shown on the graph, based upon the responses from 123 caregivers and/or patients in the NORD Patient Reported Natural History Study on OMS, we found that the most common OMS symptoms reported by OMS caregivers include:
- Loss of balance
- Myoclonus
- Opsoclonus
- Tremors
- Sleep disturbances
Is OM(A)S ever misdiagnosed?
Yes, OM(A)S can be misdiagnosed. However, we are encouraged by the data provided from the NORD Patient Reported Natural History Study on OM(A)S. We find that over the years, the likelihood of proper diagnosis is trending favorably so that now, a patient is twice as likely to have a proper initial OM(A)S diagnosis than the outcomes prior to 2010.
Can OM(A)S be present without finding a tumor?
YES! Responses from a caregiver survey show that 60% of OMS warriors have had a neuroblastoma or other cancer detected, while 40% have not
Does OM(A)S affect one gender more than the other?
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. (Updated 1/8/2018)
What are some of the leading hospitals that treat OM(A)S?
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:
- London
- Zurich
- Germany
What are some of the typical treatments used for OMS warriors?
In 2022, an OMS consensus statement was published by eighteen leading OMS specialists from around the world. Please refer to this publication on treatment protocol – Diagnosis and Management of Opsoclonus-Myoclonus-Ataxia Syndrome in Children | Neurology Neuroimmunology & Neuroinflammation
Where can I find more information on OM(A)S?
NORD has OMS information at Opsoclonus-Myoclonus-Ataxia Syndrome – Symptoms, Causes, Treatment | NORD (rarediseases.org)
In Europe, visit the Dancing Eyes Syndrome Support Trust at http://www.dancingeyes.org.uk/