LIFE WITHOUT A SMILE: INTRODUCTION TO MOEBIUS SYNDROME
Moebius (or Möbius) Syndrome is a rare genetic disorder characterized by lifetime facial paralysis. People with Moebius Syndrome can't smile or frown, and they often can't blink or move their eyes from side to side. In some instances the syndrome is also associated with physical problems in other parts of the body.
The Moebius Syndrome Foundation is a nonprofit organization started by parents and people with Moebius Syndrome. We've come together to do what we can to fight back - by spreading the word among the medical and lay communities and by supporting research into the causes, treatments, and possible cures for Moebius Syndrome.
Your tax deductible contribution can help. Please read on to learn more about Moebius Syndrome and how you can make a difference.
QUESTIONS AND ANSWERS
What is Moebius Syndrome?
Moebius Syndrome is extremely rare. Two important nerves - the sixth and seventh cranial nerves - are not fully developed, causing eye muscle and facial paralysis. The movements of the face - blinking, lateral eye movements, and facial expressions are controlled by these nerves. Other parts of the nervous system, including other cranial nerves that control other sensations and functions can also be affected.
What Are the Symptoms?
The most apparent symptoms are related to facial expression and function. In newborn infants, the first sign is an impaired ability to suck. Excessive drooling and crossed eyes may be present. In addition, there can be deformities of the tongue and jaw, and even of some limbs, including club foot and missing or webbed fingers. Most children have low muscle tone, particularly of the upper body.
Gross motor development is often delayed. (Although they crawl and walk later, most Moebius Syndrome children eventually catch up.) Speech problems often respond to therapy but may persist due to impaired mobility of the tongue and lips. As children get older, the lack of facial expression and an inability to smile become the dominant visible symptoms.
Moebius Syndrome is sometimes accompanied by Pierre Robin Syndrome and Poland's Anomaly.
How Does it Occur?
Children are born with it. Although it appears to be genetic, its precise cause remains unknown and the medical literature presents conflicting theories. It affects boys and girls equally, and there is an increased risk of transmitting the disorder from an affected parent to a child. Although no prenatal test for Moebius Syndrome is currently available, individuals may benefit from genetic counseling.
How is it Treated?
Infants sometimes require feeding tubes to maintain sufficient nutrition. Strabismus (crossed eyes) is usually correctable with surgery. Children with Moebius Syndrome can also benefit from physical and speech therapy to improve their gross motor skills and coordination, and to gain better control over speaking and eating.
Limb and jaw deformities may often be improved through surgery. In addition, plastic reconstructive surgery of the face can offer limited benefits in individual cases. (In some cases, nerve and muscle transfers to the corners of the mouth have been performed to provide some ability to smile.)
Are Most Doctors and Nurses Aware of Moebius Syndrome?
One of the most frustrating aspects of coping with Moebius Syndrome is the surprising lack of awareness among physicians and nurses. It occurs so infrequently that many children go undiagnosed for months and sometimes years after birth. Parents and those affected spend a lot of time and emotional energy explaining and re-explaining this rare condition.
How You Can Help
The rarity of Moebius Syndrome becomes, in effect, an additional complication of the disorder. Because so few members of the professional and lay public have even heard of Moebius Syndrome, medical and social support, as well as reimbursement from insurance companies, are severely limited. This lack of support services puts additional burdens on individuals and their families in their attempts to cope with Moebius Syndrome. Lack of awareness also plays a role in limiting research into potential treatments and cures for Moebius Syndrome.
Your tax deductible contribution to the Moebius Syndrome Foundation can go a long way toward raising awareness of the disorder and providing information and psychological support to families stricken by Moebius Syndrome. Your donations will also help fund scientific research into new tests, new treatments, and perhaps one day, a cure.
A life without a smile is still very much worth living. With your help, it can get a little easier.
For more information on Moebius Syndrome you can contact the Moebius Syndrome Foundation, P.O. Box 993, Larchmont, NY 10538 (914) 834-6008 or write the Moebius Syndrome News, 6449 Gerald Avenue, Van Nuys, CA 91406.
Tax deductible donations may be made payable to The Moebius Syndrome Foundation, P.O. Box 993, Larchmont, NY 10538 or call (914) 834-6008.
Written by the Moebius Syndrome Foundation, P.O. Box 993, Larchmont, NY 10538, (914) 834-6008
Also, you can contact Sharon or Dan Deveney at (703) 818-1233 to receive information about Support Groups. Our daughter, Lauren, was born 11-23-94 and was diagnosed at birth with Moebius Syndrome. We have an East Coast Support Group currently meeting every three months. They include nine families from Virginia, Washington, DC, Pennsylvania, and Maryland.