Were you or a family member recently diagnosed with OMAS?
If you or a family member were recently diagnosed with Opsoclonus Myoclonus Ataxia Syndrome (OMS / OMAS), we are here to help you. This website is designed as a guide on OMAS. If you are trying to learn more about OMAS, the content below is intended to provide some quick references to many things about the disease and direct you to other content which will provide much more information. OMAS is complicated and you will find that you will learn more every day as you delve deeper into publications and other resource materials on this disease.
What is Opsoclonus-myoclonus-ataxia syndrome (OMAS)?
Opsoclonus-myoclonus-ataxia syndrome (OMAS) goes by many names including OMAS, Opsoclonus-myoclonus syndrome (OMS), Dancing Eyes Dancing Feet Syndrome, Kinsbourne Syndrome, and Syndrome de Kinsbourne. They are all the same disease. OMAS is the widely accepted term in use now.
OMAS is an inflammatory neurological disorder, often caused by the immune system reacting to a cancerous tumor (paraneoplastic etiology). It is characterized by associated ocular, motor, behavioral, sleep and language disturbances. The onset is usually abrupt, often severe, and it can become chronic. The OMSLife Foundation in collaboration with the National Organization for Rare Disorders (NORD), and leading OMAS specialists,
developed this short animated video which describes OMAS – Opsoclonus-MyoclonusAtaxia Syndrome – Symptoms, Causes, Treatment | NORD.
Do we need to see an OMAS specialist?
YES. While many neurologists and other doctors are now able to readily diagnose OMAS, the disease is not an easy one to treat. In most situations, an aggressive treatment protocol is required for the patient. Doctors who do not specialize in OMAS treatment may tend to take a wait and see approach. This is usually not a good approach for successful long term outcomes.
Be mindful that each OMAS case is unique and relapses and set backs are common. An OMAS specialist will know how and when to take action with these changes. In the unlikely event that you choose to use a doctor who is not a specialist, we encourage you to have that doctor reach out to a specialist to be guided through the process.
How do I know the severity of OMAS for our situation?
One of the first things that OMAS specialists do is to measure the severity of the patient by utilizing a measure called the Mitchell-Pike Scale. Developed by Dr. Wendy Mitchell and Dr. Mike Pike, this scale measures six characteristics of the patient. The total score ranges from zero (0) to eighteen (18) with zero being normal and eighteen being most severely disabled.
If you are looking for an OMAS specialist anywhere in the world, we can assist you in that search. We have an extensive network of specialists who can help us find the right doctor for you. Reach out to us at info@omslifefoundation.org.
Where can I find some current resource information about OMAS?
Throughout our website, we have information on treatments, education, publications, specialists, social media and other resources. We also have developed the OMSLife Patient Registry. This registry collects patient data that is used by researchers and clinicians to better understand OMAS.
We’d suggest that you begin by familiarizing yourself with the “OMS Consensus
Statement” called Diagnosis and Management of Opsoclonus-Myoclonus-Ataxia Syndrome in Children. You can find the article in neurology.org e-magazine. This publication was written by eighteen of the leading OMAS specialists in the world. It outlines diagnosis and treatment protocols that are widely accepted as standard practice.
You can also find a lot of useful information on OMAS on the NORD (National Organization for Rare Disorders) website. Awhile ago, OMSLife partnered with some OMAS specialists to update information for NORD and to create an animated video about OMAS. Here are the links:
- General information on OMAS – Opsoclonus-Myoclonus-Ataxia Syndrome -Symptoms, Causes, Treatment | NORD
- Animated video explaining OMAS – Opsoclonus-Myoclonus-Ataxia Syndrome -Symptoms, Causes, Treatment | NORD Video
You can also find a vast amount of data on the OMSLife Patient Registry. When the patient takes the surveys, it also shows the results of all the other patients who have taken the surveys so you know how your situation compares to other patients. Visit the website at https://oms.iamrare.org or download the IAMRARE app for IOS or Android.
What type of data can the registry show me?
The OMSLife Patient Registry currently has 17 surveys. It can show a variety of data including onset statistics, treatments, therapies, family history, and so on. Here are some examples of graphs you will see in real time as you take the surveys:
How can I connect with other patients and caregivers on social media?
There are a number of ways to connect with other patients. OMSLife hosts a Facebook group for patients and caregivers and also an information page for others. You can join our Facebook group at OMSLIFE – Opsoclonus Myoclonus Syndrome Support Group. Our information page is at OMSLife Facebook Information Page. Other social media sites we suggest include:
- Dancing Eye Syndrome Support Trust (UK) – Dancing Eye Syndrome Support Trust | Facebook
- OMSLife en Espanol/Syndrome de Kinsbourne – OMSLife en Español / Sindrome Kinsbourne | Facebook
- OMSLife Awareness Instagram – OMSLife | Instagram
- OMSLife on LinkedIn – OMSLife | LinkedIn