The Stories of People With Facial Difference

We spoke to four people, who shared their individual experiences with rare craniofacial conditions.

Can you share a bit about your facial difference?

I was born with Crouzon syndrome, a very rare craniofacial condition that manifests as a facial difference and has required 25 surgeries before the age of 22. Crouzon syndrome is estimated to affect about 1.6 in 100,000 births, but rates vary considerably by geographical area and ethnic grouping. Crouzon syndrome is commonly characterized by malformations of the face and head, such that bones in the midportion of the face (e.g., eyes, nose, and upper jaw) generally grow slower than other surrounding bones. It can also be associated with significant comorbidities. For example, I also have a skin condition called Acanthosis nigricans (i.e., dark discoloration and thickening of skin in various parts throughout the body), as well as obstructive sleep apnea due to a narrow airway. Crouzon syndrome may be caused by a variety of environmental and/or genetic factors, but generally, it is caused by a mutation of one of the FGFR genes (usually the FGFR2 gene). There is no current “treatment” for Crouzon syndrome, but there are several multidisciplinary interventions in place to improve physical and psychological functioning, such as plastic surgery, facial advancements, neurosurgery, orthodontic work, and speech surgery to name a few.

How has your facial difference affected other areas of your life?

There are very few aspects of my life that have not been affected by my facial difference. Socially, all my friends and family members have witnessed my medical journey, either directly or indirectly, and I have been truly blessed to have such wonderful support systems and advocates that have been with me along this path. I would not be the person I am today without their support and guidance. More personally, my medical experiences have helped me grow as I have learned many lessons both about myself and about the world while navigating my own struggles. The challenges I have faced not only physically in coping with the surgical and post-operative experiences, but also emotionally in adjusting to the profound changes in identity that are a natural consequence of facial reconstructive surgery, have given me a unique perspective. Demystifying a facial difference and educating others to focus on the person rather than their condition is a daily challenge. However, I have learned coping skills that have allowed me to cultivate and appreciate the values in myself that connect me to others.

I am not defined by my difference, but rather by the way I treat and care for others. Learning this lesson was not easy. I battled constant disruption due to surgeries and stigma throughout my life. Despite it all, I knew that what I could control was leaving a positive impression on others to show them another way of understanding people beyond what they see surface level. As such, I chose to pursue graduate training to become a clinical psychologist committed to improving the lives of children facing complex, and often visible, medical conditions.

Throughout my graduate career, I have dedicated my psychology training to learning interventions that improve well-being and promote resilience for youth with craniofacial conditions. Without my facial difference, I would not have such a defined career path and I may not have learned such important lessons. These experiences have solidified my desire to work with individuals with craniofacial conditions in order to help them successfully adapt to their conditions as well as promote agency and confidence. By helping children to see themselves as more than someone with a condition, but rather someone who can thrive despite the circumstances they were given, I have grown considerably as well.

What support have you been able to find in the community and why is having a community in this space so important to you?

I was incredibly fortunate to have received tremendous support from my friends, family, and members of my community as I grew up with a facial difference. These supports have helped shape my identity and taught me the importance of connecting to others. Within my family, my father and mother were my biggest supporters and advocates. They taught me important lessons about positive reframing and cognitive restructuring, as well as skills and strategies to cope in distress (including meditation and mindfulness). As I grew up, I began connecting with other members of my craniofacial community. At NYU, I began volunteering and assisting with projects at myFace, a nonprofit organization dedicated to providing support to individuals with facial differences and their families. My first experience with myFace was over 10 years ago when I assisted with a “Narrative Video Therapy” project designed to help children born with a facial difference better cope with their differences. This video project provided a vehicle by which pediatric patients were able to connect and reap the benefits of adolescent and young adult patients, including myself, who had already undergone similar surgeries. As an older patient, I was able to provide a perspective regarding similar life situations that only someone with a facial difference would understand.

For the first time, I felt what it was like to be a part of the craniofacial community and understand the importance of social support within this environment. This project and my early years with myFace introduced me to a world in which I could express myself to others without judgment who were facing similar societal and psychological challenges. Over the years, I continued to work with the NYU craniofacial team and myFace and began attending support groups for adults with craniofacial conditions. More recently, [toward the end of] my graduate training, I created and co-lead a support group for adolescents with craniofacial conditions at myFace. This group has allowed younger patients with craniofacial conditions to connect and share their own experiences with others, while also teaching them important skills to overcome certain challenges. Not to mention, we also remind them the importance of having fun together! Throughout my time with my craniofacial community, I have felt a sense of warmth and bonding that I had never previously experienced. Knowing that others have gone through the same or similar experiences helps to normalize the situation and for individuals within the craniofacial community, being “normal” can sometimes feel like a foreign concept. Not feeling different for the first time in my life was one of the best feelings in the world, and my hope is that everyone who has a facial difference can find similar support.

What words of encouragement would you share with others in this community?

The late, great football coach Vince Lombardi once said, “the measure of who we are is what we do with what we have.” Do not let your difference define you, let you define you. Because of the limited understanding and awareness by others about our differences, society has a misconception about what is “normal” and what it means to have a difference. However, there is no such thing as “normal” (in fact, a very wise adolescent participant in one of my craniofacial groups told me that “normal is a microaggression,” which I fully agree with). Although we as a society may share similar experiences, everyone has a different story, and everyone is different. That is what makes us special. Those with facial differences are unique, and, even though they may face challenges of prejudice and discrimination, it is important to remember that the uniqueness is what can help you stand out and overcome any obstacle. Learn and grow from these challenges and find what gives you strength and harness that energy. Society may tell you to change, but it is not that you need to change, it is that it would better serve you to develop and enhance the skills that you already have from your journey and utilize them to move forward. You are always stronger than you think, so surround yourself with those who love and support you and find that inner strength. Do not let anyone else tell you otherwise!

When you think of the future, what do you hope it looks like for those with a facial difference?

Firstly, I hope that we can enhance the awareness and understanding of facial differences worldwide. As previously mentioned, the lack of understanding of craniofacial conditions by the general public, as well as the pressures and influences of society, can negatively impact an individual’s social and psychological functioning. Because others are less familiar with these conditions, they may not be aware of how to behave around or treat others with a facial difference. As such, it is my hope that we can continue to conduct community outreach programs and disseminate research that brings awareness to our community. It is certainly not an easy undertaking, but any step in this direction could do wonders for tackling stigma and prejudice that affects so many with a facial difference. Secondly, research has shown that some individuals (particularly adolescents and young adults) with craniofacial conditions experience significant distress and dysfunction (e.g., lower quality of life, self-esteem, social functioning, etc.). However, the avenues to best address these concerns remain unclear. Therefore, it would be important to develop and refine useful psychotherapeutic interventions designed to target specific psychosocial needs of those with craniofacial conditions. My hope is that, in the future, there will be a flexible, holistic intervention that will be commonplace for folks with facial differences to help them overcome any challenges related to their medical experiences.

Anything else you would like to add?

I think it is also important to highlight that I have a life outside of my facial difference. I love traveling, hiking and rock climbing, playing board games, spending time with friends and families, watching movies, and exploring the many activities and adventures that are offered in whatever city I’m living in. I have a loving and supportive fiancé, an adorable dog named Luna, and even though I never thought I would find that someone special, I have been able to create my own family despite the many doubts I had growing up. It’s never too late and I do believe that there is always someone (or multiple “ones”) out there who will love you for you. You just have to find them.

Can you share a bit about your facial difference?  

I was born with a cleft lip, a hearing loss in both ears, and no vision in my left eye. I had six surgeries, years of orthodontics, and speech therapy growing up. From the time I was three, I wore a hearing aid.

How has your facial difference affected other areas of your life?  

Although I had challenges, I was always able to do what I wanted in my life. When I was a baby, the neurosurgeon told my parents that I would never be able to ride a bike. But with the unwavering support and love from my parents and my perseverance, I proved them wrong. I can ride a bicycle, drive, ski, and more. 

When I was a child, people would stare. I was teased, kids would say mean things. I often sat alone in the lunchroom and on the school bus. Those moments stayed with me, even today.  

What support have you been able to find in the community and why is having a community in this space so important to you?

In my early twenties, I joined the Inner Faces, a group of young adults who had craniofacial differences. It changed my life. I spent so much of my life wanting to fit in — to be like the other kids — and here was a group of people who all had facial differences like me. 

The Inner Faces wrote an original musical called Let’s Face the Music. Collaborating with visionary director and composer Elizabeth Swados and Jodie Berlin Morrow, we told the stories of our lives and what it was like to grow up with facial differences. In one powerful piece, we looked into a mirror and shared what we saw. We performed the show at the One Dream Theater in New York City. It was the first time I got up on stage and revealed, in my own way, what it was really like for me.  

Almost eight years ago, I got the dream job for me. I was hired to be the director of Family Programs at myFace, a nonprofit that supports children and adults with craniofacial differences. I knew that I wanted to do all I could to make it easier for children living with facial differences than it was for me. No child should have to go through what I did.

What words of encouragement would you share with others in this community?

There is a community out there for you where you can be seen, where you can be heard. I always say there is power in the shared story, in knowing you are not alone. I think that is so true.

When you think of the future, what do you hope it looks like for those with a facial difference?

That all people with craniofacial differences are accepted and respected.  

Anything else you would like to add?

I was so inspired by the Young Adult novel, Wonder, by R.J. Palacio that it led me to help create a curriculum guide for the book. At myFace we designed a whole program to present to schools. Then I began visiting schools, speaking to thousands of students, and sharing my story. I talk about differences, choosing kindness, and being an upstander, not a bystander.  I have spoken at over 150 schools, reaching more than 30,000 students.  

Can you share a bit about your facial difference?

I was born with a cleft palate and lip. My first surgery was at six weeks and my last surgery was a month ago.

How has your facial difference affected other areas of your life?  

It has been a challenging living with a facial difference. I had to accept my difference and learn to love and appreciate the skin I am in. While in a broken mind state, it has impacted my relationships with others including my family, how I treat them and how they treat me. [It has affected] my career and work, [through] lots and lots of negative self-talk and sabotage. Now that I am in a different place mentally, the people and opportunities I attract are much healthier. I am still looking for that love connection though.    

What support have you been able to find in the community and why is having a community in this space so important to you? 

Having this space is important to me because I would probably still be trying to convince myself that I am not different. MyFace was the first place where I could unpack everything about living with a cleft lip and palate and begin a new story, where I say everything from my fears to my joys. In addition to being seen and heard by my peers in the craniofacial community I was also able to get the confidence to seek the medical attention I needed to correct the parts that I can. In my most recent operation, I had a friend in the community going through a procedure as well — we were able to lift and encourage each other during that time. That made the healing a much easier process.

What words of encouragement would you share with others in this community? 

I would encourage anyone that has a broken mindset to shift your mindset. Know you are significant. You are whole. If you are feeling insignificant, join a support group and find a community where you can begin to feel whole. 

When you think of the future, what do you hope it looks like for those with a facial difference? 

I imagine a future where living with a facial difference would be recognized and respected the same way other disabilities are recognized like hearing or vision impairment. I envision a future where those living with a facial difference feel safe or brave enough to come out of the shadows and begin to heal the trauma associated with a facial difference and represent the uniquely beautiful, intelligent, and impactful humans that we are. 

Can you share a bit about your facial difference?

We are the Bacchus Family from Guyana, a small country in South America. We live and work in Trinidad & Tobago. We were blessed with our precious and unique baby girl Samara Hadiya Bacchus on January 29th, 2018. To our surprise, at birth, she had this huge, pigmented lesion that takes up most of the left side of her face and nose. We later learnt it’s called a congenital melanocytic nevus (CMN). It’s a rare form of birthmark occurring in roughly 1 out of 20,000 live births. Because of the type of birthmark and the chances of it being malignant(cancerous) and its location we didn’t want to risk her health and safety. So, we opted to have it removed surgically. With the guidance and help of Samara’s healthcare provider Dr. David Staffenberg, we have started this journey.

How has your facial difference affected other areas of your life?

As parents we want the best for our children, they are all jewels in our hearts. For Samara to grow up in society with her peers, our biggest fear is for her confidence to be shattered outside our home or when she starts school due to any form of bullying.

Even with a strong support system and the love she has at home, especially from her big sister, from experience with society we recognize that it just takes one bully to destroy all the self-love and self-worth we established for her. We want her to never compare herself to others but to always be grateful for life and God’s mercies.

What support have you been able to find in the community and why is having a community in this space so important to you? 

The best support we are blessed with on this journey for Samara is our second family and our pillar of hope, the myFace Organization/community. The incredible team at myFace is our light, [we thank] myFace for brightening our view when all seemed dark. We are lucky to call them our family now, they make us feel secure and that we are not alone in this journey. myFace is our rainbow after the storm and for that we can never repay them and we are forever grateful.

What words of encouragement would you share with others in this community? 

In life God will test us in different ways. In the moment it will be difficult, but never stop praying and believing because prayers really can move mountains. Always remember you are braver than you believe, stronger than you seem, smarter than you think, and loved more than you know. Never ever give up! Having faith is not believing that God can, it’s knowing that he will see you through.

When you think of the future, what do you hope it looks like for those with a facial difference?

There is hope, there is light at the end of the tunnel for persons with facial differences with the support of Organizations like myFace, health facilities like NYU Langone and their health professionals. The treatment/surgical procedures have come a long way with ever evolving and improving technology that are used by healthcare professionals today. With the science coming so far, families can feel comfortable and reassured that they can get the help they desire. Stay strong, stay positive, for change is possible.

Anything else you would like to add?

Finally, our family wishes to encourage the wider community and the world at large to support or continue to support the myFace organization for the exceptional contribution they make to families in helping to change faces and transform lives.