TAMPA (BLOOM) – Moebius Syndrome is a rare neurological condition that affects the facial muscles, causing difficulty with facial expressions, eye movements, and speech. It is a complex condition that can lead to social isolation, mental health issues, and challenges in communication and education. However, with the right advocacy, education, and support, individuals with Moebius Syndrome can lead fulfilling and meaningful lives.

Living with Moebius Syndrome

Sharing personal stories of individuals with Moebius Syndrome and their families can help us to better understand the challenges they face and how advocacy, education, and support can make a difference.

One such inspiring individual is Jessica Maher, a USF student who believes that living with Moebius Syndrome doesn’t define who she is as a person; it simply changes the way she approaches the world. Jessie’s unique perspective comes from having faced adversity and discrimination throughout her life. Despite being told by peers, teachers, and coaches that her dreams were unattainable because of her disability, Jessie worked hard to achieve every goal she set for herself.

When Jessie was starting high school, she fell in love with American Sign Language (ASL) and the entire culture surrounding the language. However, when she went to the high school for a school electives fair, the teacher of the ASL program told her that she wouldn’t allow her in her class and would fail her if she was actually put in the class. The teacher explained that Jessie could never learn ASL because she couldn’t make facial expressions or move her eyebrows, and no one would understand her when she used the language. Undeterred by the teacher’s negativity, Jessie decided to ignore what she had been told and enrolled in the ASL class the following year. Although the teacher was no longer the head of the program, Jessie went on to learn the language for three years in high school and one additional year in college. She thrived in ASL and never let her disability stop her from learning or communicating with those in the deaf community.

Through all the discrimination and challenges in her life, there has always been room for education and awareness. Jessie shares her story with every teacher, coach, classmate, manager, and coworker, hoping to bring awareness and understanding of Moebius Syndrome to those around her. After fully embracing who she is and what she has been blessed with, Jessie became a crucial part of the Moebius Syndrome Foundation, where she advocates for the community, especially younger kids who need a role model who “looks like them”. Jessie didn’t have that role model growing up, and now it is her mission to be that for them. By spreading awareness, she hopes to bring people to the realization that while everybody is different, it’s our differences that make us unique. Jessie believes that having facial paralysis doesn’t define or limit who she is; she is vibrant, strong, and beautiful. How she deals with her disability is by proving to the world that everybody is unique and everybody is capable, no matter the difference.

Facial Equality Week

May 15-19 marks Facial Equality Week, a dedicated time to raise awareness and promote understanding about facial differences, including conditions like Moebius Syndrome. This week serves as an opportunity to emphasize the importance of acceptance, inclusion, and equality for individuals with facial differences.

Facial Equality Week aims to challenge societal norms and perceptions regarding physical appearance. It seeks to educate the public about the diversity of facial appearances and the impact that prejudice and discrimination can have on individuals with facial differences. By fostering a more inclusive society, this initiative strives to create an environment where everyone is valued and treated with respect, regardless of their physical appearance.

During Facial Equality Week, various organizations and advocacy groups come together to organize events, workshops, and campaigns to promote awareness and education. These activities often include sharing personal stories, hosting informational webinars, engaging in social media campaigns, and partnering with local communities to spread the message of acceptance and equality.

It is important to recognize that Facial Equality Week extends beyond raising awareness about Moebius Syndrome alone. It encompasses a broad range of conditions and facial differences, including cleft lip and palate, facial paralysis, birthmarks, and scars, among others. By highlighting the experiences and challenges faced by individuals with facial differences, Facial Equality Week seeks to foster empathy, understanding, and support within society.

During this week, it is encouraged to engage in conversations, attend events, and support the initiatives organized by advocacy organizations, such as the Moebius Syndrome Foundation and other related organizations dedicated to promoting facial equality. By participating in these activities and spreading awareness through social media platforms and personal networks, we can contribute to creating a more inclusive and accepting world for individuals with facial differences.

Facial Equality Week serves as a reminder that our differences should be celebrated rather than stigmatized. By embracing diversity and promoting facial equality, we can create a society that values every individual for who they are, beyond their physical appearance.

Empowering individuals with Moebius Syndrome requires advocacy, education, and support. Through advocacy efforts, individuals with Moebius Syndrome can gain recognition and acceptance in their communities. Education can help individuals with Moebius Syndrome to improve their communication and social skills. Support can help individuals with Moebius Syndrome to feel more connected to others and promote independence. By working together to raise awareness and provide resources, we can empower individuals with Moebius Syndrome to lead fulfilling and meaningful lives.

Advocacy for Moebius Syndrome

Advocacy is a critical component in raising awareness and promoting inclusion for individuals with Moebius Syndrome. Through advocacy efforts, people with Moebius Syndrome can gain recognition and acceptance in their communities. Advocacy can also lead to more funding for research, which can lead to improved treatments and outcomes.

There are many successful advocacy initiatives that have been created for Moebius Syndrome. For example, Moebius Syndrome Foundation, a non-profit organization, has been dedicated to raising awareness and providing support to individuals and families affected by Moebius Syndrome since 1990. They host educational events, support groups, and fund research on Moebius Syndrome.

Education for Moebius Syndrome

Education is another essential component in empowering individuals with Moebius Syndrome. Education can help individuals with Moebius Syndrome to improve their communication and social skills. It can also help healthcare professionals and educators to better understand the needs of individuals with Moebius Syndrome.

Assistive technologies and accommodations can also play a vital role in facilitating education and communication for individuals with Moebius Syndrome. For example, speech therapy, augmentative and alternative communication devices, and modifications in classroom settings can all help individuals with Moebius Syndrome to achieve academic and social success.

Support for Moebius Syndrome

Finally, support is essential in improving mental health and well-being for individuals with Moebius Syndrome. Social isolation and depression are common challenges that people with Moebius Syndrome face. Therefore, having a strong support system can help individuals with Moebius Syndrome to feel more connected to others and to promote independence.

Support can come in many forms, including peer support groups, counseling services, and support from family, friends, and caregivers. Peer support groups can provide a sense of community and belonging for individuals with Moebius Syndrome. Counseling services can help individuals with Moebius Syndrome to cope with the emotional challenges associated with their condition. Finally, family, friends, and caregivers can provide support and promote independence by assisting with daily activities and encouraging participation in social activities.

Treatment

Although there is currently no cure for Moebius Syndrome, there are several treatment options available that can help manage the symptoms of the condition. These treatment options are designed to improve facial muscle strength and movement, as well as improve speech and communication abilities. Below are some of the most common treatment options for Moebius Syndrome:

• Surgery: Surgical intervention can be beneficial for some individuals with Moebius Syndrome. Procedures such as smile surgery or static sling surgery can help improve facial symmetry and muscle strength, while eyelid surgery can improve eye closure and prevent eye dryness.
• Physical therapy: Physical therapy can help improve facial muscle strength, range of motion, and coordination. A physical therapist can design a customized exercise plan that targets the specific needs of each individual with Moebius Syndrome.
• Occupational therapy: Occupational therapy can help individuals with Moebius Syndrome to develop skills for daily living, such as self-care and functional mobility. An occupational therapist can also provide recommendations for assistive devices that can improve independence and quality of life.
• Speech therapy: Speech therapy can help improve speech and communication abilities for individuals with Moebius Syndrome. A speech therapist can provide techniques to improve speech clarity and help individuals with Moebius Syndrome to develop alternative forms of communication, such as sign language or augmentative and alternative communication devices.
• Psychological therapy: Psychological therapy can help individuals with Moebius Syndrome to cope with the emotional challenges associated with their condition. Counseling can also help individuals with Moebius Syndrome to develop social skills and improve self-esteem.

It is important to note that treatment options should be individualized to each person’s needs and preferences. A team of healthcare professionals, including physicians, physical therapists, occupational therapists, and speech therapists, can work together to create a comprehensive treatment plan for individuals with Moebius Syndrome.

Additional Challenges

In addition to education and support, individuals with Moebius Syndrome face other challenges that can impact their quality of life. Access to healthcare, for example, can be a significant challenge for individuals with Moebius Syndrome. Due to the rarity of the condition, many healthcare providers may not be familiar with the condition or may not have experience treating individuals with Moebius Syndrome. This can lead to delays in diagnosis and treatment, as well as difficulty finding healthcare providers who are knowledgeable about the condition.

Employment opportunities can also be a challenge for individuals with Moebius Syndrome. Many individuals with Moebius Syndrome may face discrimination in the workplace due to their condition. Facial paralysis and speech difficulties can make it challenging for individuals with Moebius Syndrome to communicate effectively with coworkers and customers, which can impact their ability to perform their job duties. Additionally, accommodations may be needed to enable individuals with Moebius Syndrome to perform their job duties, which can be costly for employers.

To address these challenges, there are several potential solutions. One is to increase awareness and education about Moebius Syndrome among healthcare providers, employers, and the general public. This can help to reduce stigma and increase understanding about the condition, which can lead to better healthcare and employment outcomes for individuals with Moebius Syndrome.

Another solution is to advocate for policies that support individuals with disabilities, such as the Americans with Disabilities Act (ADA). The ADA requires employers to provide reasonable accommodations for individuals with disabilities, which can help to level the playing field for individuals with Moebius Syndrome in the workplace.

Individuals with Moebius Syndrome can benefit from peer support and community involvement. Support groups and community organizations can provide a sense of belonging and connection for individuals with Moebius Syndrome, as well as resources and information about how to navigate healthcare and employment challenges. By coming together as a community, individuals with Moebius Syndrome can advocate for their own needs and work towards a more inclusive and supportive society.

Read Jessie’s story in her own words below:

“Living with Moebius syndrome doesn’t define who I am as a person, it simply changes the way I approach the world. Being different allows me to see things from a unique perspective, having faced adversity and discrimination all my life. I’ve been told by peers, teachers, coaches that my dreams are unattainable, because of my disability. Every goal i’ve set for myself, i’ve worked hard to achieved. 

When I was starting high school I had fallen in love with ASL (American Sign Language), and the entire culture of the language. When I went to the high school for a school electives fair, the teacher of the ASL program told me she wouldn’t allow me in her class, and that she would fail me if I was actually put in her class. She told me that because i couldn’t make facial expressions, or move my eyebrows, that I could never learn ASL, that no one would understand me when I used the language. The following year, I decided to ignore what she had told me, and decided to take her class. She was no longer the head teacher of the program, however i went on to learn the language for 3 years in high school and one additional year in college. I thrived in ASL and never let my disability stop me from learning or communicating with those in the deaf community.  Through all the discrimination and challenges in my life, there has always been room for education and awareness. Every teacher, coach, classmate, manager, coworker, I’ve told them about Moebius Syndrome. I used to feel so oppressed and like i had to stay hidden because I was different, but embracing my difference was the thing that actually made me shine in everything i’ve set myself to do. After fully embracing who I am and what i’ve been blessed with, I became a crucial part of the Moebius Syndrome Foundation. I advocate for the community, specifically the younger kids, who need a role model who “looks like them”. I didn’t have that role model growing up, and It is my mission to be that for them. By spreading awareness, I hope to bring people to the realization that while everybody is different, it’s our differences that make us unique. Having facial paralysis doesn’t define or limit who i am, I am vibrant, i am strong, i am beautiful, and how i deal with my disability is I prove to the world that everybody is unique and everybody is capable, no matter the difference.”

Jesse Maher

Statistics

Moebius Syndrome is a rare condition, and as such, data about its prevalence and incidence is limited. However, some studies suggest that the prevalence of Moebius Syndrome is approximately 1 in 500,000 individuals worldwide. The condition is thought to be more common in males than females, with a male-to-female ratio of 3:2.

Moebius Syndrome can present with a range of symptoms, and the severity of the condition can vary widely among individuals. Facial paralysis and difficulty with eye movements are hallmark features of the condition, but other symptoms can include speech and feeding difficulties, hearing loss, limb abnormalities, and cognitive impairment. Some individuals with Moebius Syndrome may also have associated conditions, such as autism spectrum disorder, intellectual disability, or epilepsy.

There is currently no cure for Moebius Syndrome, and treatment options are focused on managing symptoms and improving quality of life. Physical therapy, occupational therapy, speech therapy, and surgical interventions can all be helpful in addressing specific aspects of the condition.

Despite the challenges associated with Moebius Syndrome, many individuals with the condition are able to lead fulfilling lives. With appropriate support and resources, individuals with Moebius Syndrome can achieve their goals and contribute to their communities. By increasing awareness and understanding of Moebius Syndrome, we can work towards a more inclusive and supportive society for individuals with disabilities.

Resources

For individuals and families affected by Moebius Syndrome, there are a number of resources available that can provide support, information, and advocacy. Here are some organizations and resources that readers may find helpful:

• The Moebius Syndrome Foundation (https://moebiussyndrome.org/) is a non-profit organization that provides information, support, and advocacy for individuals and families affected by Moebius Syndrome. The Foundation offers resources such as a directory of healthcare providers, information about research studies, and a list of support groups.
• The National Organization for Rare Disorders (NORD) (https://rarediseases.org/) is a patient advocacy organization that provides support and information for individuals and families affected by rare diseases and syndromes, including Moebius Syndrome. NORD offers a variety of resources, including educational materials, advocacy resources, and a directory of patient organizations.
• The Rare Diseases Clinical Research Network (RDCRN) (https://www.rarediseasesnetwork.org/) is a network of research consortia that work to advance understanding of rare diseases and syndromes, including Moebius Syndrome. The RDCRN conducts research studies and clinical trials to improve diagnosis, treatment, and management of rare diseases.
• The Moebius Syndrome Research Trust (https://www.moebiusresearchtrust.org/) is a non-profit organization that funds research into the causes and treatment of Moebius Syndrome. The organization supports research studies around the world, with the goal of improving outcomes for individuals with the condition.
• Support groups can also be a valuable resource for individuals and families affected by Moebius Syndrome. The Moebius Syndrome Foundation offers a list of support groups on their website, and other organizations such as NORD and RareConnect (https://www.rareconnect.org/) also offer support groups for individuals with rare diseases.

By connecting with these resources, individuals and families affected by Moebius Syndrome can find the support and information they need to navigate the challenges of the condition. With ongoing research and advocacy efforts, we can continue to improve outcomes for individuals with Moebius Syndrome and work towards a more inclusive and supportive society.