Q: What is OMS?
A: 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.
Q: What is the average age of OMS warriors?
A: 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.
Q: What are some of the symptoms of OMS?
A: Some of the common symptoms reported by OMS caregivers include:
- Opsoclonus (dancing and darting eyes)
- Myoclonus (shaking and jerking arms and legs)
- Loss of balance, stumbling, and/or inability to walk
- Irritability, mood swings
- Inability to sleep, restlessness
Q: Is OMS ever misdiagnosed?
OMS is frequently misdiagnosed. A survey of 125 OMS caregivers showed that over 70% of OMS warriors were misdiagnosed initially.
Q: Can OMS be present without finding a tumor?
Responses from a caregiver survey show that 60% of OMS warriors have had a neuroblastoma or other cancer detected, while 40% have not.
Q: Does OMS affect one gender more than the other?
A: As shown on the graph, based upon the data provided from 408 OMS caregivers on an informal, non-scientific survey data through August 2014, we found that OMS impacts girls more often at 56% versus 44% for boys.
Q: What are some of the leading hospitals that treat OMS?
A: 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
- Cincinnati Children’s Hospital
Leading hospitals in Europe include:
Q: What are some of the typical treatments used for OMS warriors?
A: 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.
Q: Where can I find more information on OMS?
A: 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/
Q: What is The OMSLife Foundation?
A: The OMSLife Foundation is a non-profit organization whose goal is to help caregivers and researchers in the battle against OMS. Founded in 2012, OMSLife was established after OMS warrior Alexa was diagnosed with OMS and the family found information was lacking and inconsistent. Friends and family have helped build OMSLife into a primary resource of OMS information with a web site, wiki, Facebook groups, You Tube and Twitter.
OMSLife helps caregivers connect with other caregivers in order to find answers to their issues while also developing support networks. OMSLife also helps connect caregivers with OMS specialists and clinicians. This is especially important for caregivers outside of the United States.
Q: What is the mission of The OMSLife Foundation?
A: Our mission is to spread awareness of Opsoclonus Myoclonus Syndrome, maintain a support network for caregivers, and fund research for a cure.
Q: Are my donations to The OMSLife Foundation tax deductible?
A: Yes. The IRS designated The OMSLife Foundation a non-profit organization in 2012 with donations tax deductible.
Q: What percentage of my donation goes to the objectives of your mission statement and what percentage goes to overhead?
A: Every dollar that you give to The OMSLife Foundation goes to research, awareness campaigns, maintaining the support network for OMS caregivers. All overhead costs including web site, printing and postage, web conferencing, and even fees for credit card and PayPal donations are underwritten.
In our first three years, we have provided research and training funding to The National Myoclonus Center (Dr. Michael Pranzatelli), Children’s Hospital Los Angeles (Dr. Wendy Mitchell), and Boston Children’s Hospital (Dr. Mark Gorman) as well as hosted caregiver conferences in Los Angeles and Houston.