For Friends & Relatives

How To Provide Support to Individuals With Moebius Syndrome and Their Families

Moebius syndrome is a rare condition with many different presentations. Understanding Moebius syndrome as a friend or relative can be challenging. Every individual with Moebius syndrome has a unique set of symptoms and severity. It’s important to take the time to understand your loved one’s specific needs and learn how you can support them. Request an information packet to learn more.

Supporting Individuals With Moebius Syndrome

There are more than 10,000 facial expressions made by the human body. These expressions are key to nonverbal communication. Since individuals with Moebius are unable to express many of these 10,000 nonverbals, they are often misunderstood. Low awareness of Moebius syndrome further challenges social encounters.

1. Be patient and take the time to understand

Learn to listen and understand someone with Moebius for who they are. Hand gestures and voice inflections will give guidance toward emotions. Eye contact will help you focus and understand the individual as well. Do not ask the person to smile or provide other clues to you to indicate their mood; learn to read their moods as they are. Tone of voice and body language will help guide your understanding. 

Moebius makes some people’s speech harder to understand. If you have trouble understanding what someone is saying, avoid the temptation to pretend you heard them. Everyone deserves to be fully understood. Politely ask the person to repeat themselves. If you are still having difficulty, ask them to write it down or communicate it another way. Many people find that once they get to know the person with Moebius, understanding them becomes second nature.

2. Validate that Moebius syndrome is a part of one’s identity.

Moebius can be an important part of what makes you, you. It’s healthy to talk openly about Moebius with friends and family. If the topic of Moebius is avoided, it implies that it is shameful and perpetuates stigma. Research shows that many people with rare disorders need more social support. People with Moebius benefit from connecting with the Moebius community, by attending conferences or connecting online. 

Family and friends can support people with Moebius by making them aware of options to learn more about their condition and connect with others. Some people with Moebius choose to be very involved in the community, while others prefer to keep their distance. Either is a valid choice. 


3. Support self-advocacy

While it is natural for parents to play a strong advocacy role in healthcare and education early on, it’s important to help young people build these skills themselves. This may involve including young people in discussions with healthcare providers about treatment decisions and discussions with teachers about Moebius (including IEPs if applicable). It is also important to equip young people with Moebius with language to explain Moebius simply and succinctly to others. Parents can model this behavior at first, and later have their child practice.

4. Help spread awareness

Moebius Syndrome Awareness Day is January 24. Wear purple and help educate others on Moebius syndrome. Read more: 7 Things to Understand on Moebius Syndrome Awareness Day.

5. Attend a conference

The annual Moebius Syndrome Foundation conference provides education, networking, and medical support for individuals with Moebius. Learn more.

6. Raise funds and donate to the Moebius Syndrome Foundation

With more awareness and research into Moebius syndrome, we can continue to improve the lives of our loved ones living with this condition.


Supporting Parents of a Child With Moebius Syndrome

A diagnosis of Moebius syndrome in early childhood may come as a surprise. Since Moebius syndrome cannot be diagnosed during pregnancy, many families feel unprepared for the diagnosis. Most people have never heard of Moebius syndrome until a family member is affected.

Parents may feel a variety of emotions as they learn about Moebius syndrome, such as guilt, surprise, grief, or relief to have a diagnosis. As a supporter of these parents, it is important to acknowledge Moebius syndrome as a legitimate medical condition and to take the time to understand the nuances of the diagnosis. Moebius syndrome usually does not indicate cognitive impairment and young children typically catch up with their peers in gross motor skills between the ages of 3 and 5. Projecting your own thoughts or evaluation of the child, denying or avoiding the condition, or blaming the parents for Moebius syndrome can damage the relationship with your loved ones. 

Be sensitive to the stress and emotional pressure parents go through as they navigate a diagnosis of Moebius syndrome. Coordinating doctor’s visits, traveling to appointments, navigating surgeries, and learning how to administer medications and monitor medical equipment can be overwhelming.

Ask how you can be supportive. Avoid assuming you know what support your loved one needs. Ask “What would be the most helpful and useful way to support you right now?” and help fulfill needs. Some families may appreciate meals or babysitting for older siblings. Others may prefer emotional support, like a partner to listen while they take a walk.

Be inclusive. Having a child with Moebius syndrome shouldn’t change the family’s standing in social and family events. Continue inviting the family to events and activities. If planning an event, host the event in an accessible facility or park where everyone can participate.

Be mindful of how you address facial differences. Facial differences are not scary, dangerous, evil, ugly, or funny. Yet, the advertising, entertainment, and media industries tend to reinforce these ideas. Counter these messages by seeking out inclusive content, such as the book Wonder by R.J. Palacio. Avoid sharing or liking social media memes and jokes that portray individuals with facial differences in a negative light.

Taking the time to educate yourself on Moebius syndrome is the first step in becoming a strong family or friend supporter of your loved ones with Moebius.