Moebius syndrome

Is Moebius syndrome inherited?

Most cases of Moebius syndrome are not inherited and occur as isolated cases in individuals with no history of the condition in their family (sporadically). A small percentage of cases of Moebius syndrome have been familial (occurring in more than one individual in a family), but there has not been a consistent pattern of inheritance among all affected families. In some families the pattern has been suggestive of autosomal dominant inheritance, while in other families it has been suggestive of autosomal recessive or X-linked recessive inheritance.

Last updated on 05-01-20

What is the definition of a disability?

The Americans with Disabilities Act National Network website has information on the definition of a disability: What is the definition of disability?

Last updated on 05-01-20

How might I explore my question further?

We are going to suggest you connect with the following resources and also talk to your doctor or other trusted medical professional (for example a nurse or a speech, occupational or physical therapist) about your concerns. A medical professional who knows you well is in the best position to discuss possible limitations which you may face and also discuss options to overcome them.

Nonprofit support and advocacy groups can offer a way to connect to others who may have similar experiences and share similar concerns. In addition, members of the Medical Advisory Boards may be be an excellent resource to answer your questions.

For Moebius syndrome there is a very active support and advocacy group in the United States - but like most foundations for rare conditions, it welcomes international members. It has an active young adult and adult platform. And even has a Young Adult Advisory Board which is presently expanding and accepting applications for new young people to join.

Moebius Syndrome Foundation
PO Box 147
Pilot Grove, MO 65276
Telephone: 660-834-3406
E-mail: vicki@moebiussyndrome.com
Website: http://www.moebiussyndrome.com

The Moebius Syndrome Foundation has information on Employment and Disability Resources.

There is also a group in the United Kingdom. This group appears more focused on driving research to gain a better understanding of the condition and to develop treatments. However, in addition, the group does appear to hold a conference during which people affected by Moebius syndrome in the UK can connect in person with one another.

Moebius Research Trust
49 Inglis Avenue
Port Seton
East Lothian Eh32 0ag
United Kingdom 01875 819822
Email: info@moebiusresearchtrust.org
Website: http://www.moebiusresearchtrust.org

Last updated on 05-01-20

Are individuals with Moebius syndrome considered to be handicapped/disabled?

This question is a bit difficult to answer due to the fact that not all individuals with Moebius syndrome are affected in the same way. Moebius syndrome primarily affects cranial nerves 6 and 7, causing those with the condition to be unable to move their faces (smile, frown, etc.) or move their eyes from side to side. However, there may also be skeletal involvement causing hand and feet abnormalities. Respiratory problems, speech disorders, visual impairments, and sensory integration dysfunction may also be present. In addition, approximately 30% of children with Moebius syndrome are on the autism spectrum. Children with Moebius syndrome may learn to walk and crawl later than other children but many will eventually catch up. In addition, speech therapy can address the speech problems seen in many children with this condition.

Last updated on 05-01-20

Are there any concerns for a person with Moebius syndrome having anesthesia?

Orphanet, the European information and resource database for rare and genetic conditions, maintains anesthesia guidelines for many rare and genetic conditions, including one for Moebius syndrome: Anesthesia guidelines for Moebius syndrome

Last updated on 05-01-20

What are the chances of having a second child with Moebius syndrome?

Most cases of Moebius syndrome are isolated, occurring sporadically in only one individual in a family. Although a few familial cases have been reported, no specific genetic cause of the condition has been identified and the manner in which the condition may be inherited is unclear. While the exact recurrence risk for Moebius syndrome in a family with one affected individual is not known, it has been estimated to be about 2% (1 in 50).

Individuals who are interested in learning more about their individual risk to have a child affected with Moebius syndrome may consider speaking with a genetics professional.

Last updated on 05-01-20

What is the long term outlook for Moebius syndrome?

With continued proper medical care, individuals with Moebius syndrome, who do not have serious life threatening complications in their first year of life, usually have a normal life expectancy.

Matthew S. Joffe, MA, who has Moebius syndrome, may have put it best when he said: "And I've learned that even though Moebius syndrome does not go away, I could learn to live with it, get beyond it, and have a full and meaningful life." His full article can be found on "For Adults Living with Moebius" webpage of the Moebius Syndrome Foundation website.

Last updated on 05-01-20

Name: Moebius Syndrome Foundation PO Box 147
Pilot Grove, MO, 65276, United States
Phone: 660-834-3406 Toll Free: 1-844-663-2487 Email: info@moebiussyndrome.org Url: http://moebiussyndrome.org/

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The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

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