Treacher Collins Syndrome (TCS)

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    Community Voices

    What society does not want to hear (but actually should)

    #TreacherCollinsSyndromeTCS #craniofacial

    First of all: i am not a craniofacial disability advocate. Or by extension, i am not An advocate for anything at all. Im just An anonymous writer. So no, im not going to provide you information about myself. Not my age,not my country,not my hobby's and not the color of my hair. The only thing i Will say is that i am not a native English speaker.therefor,there Might be some spelling errors in my post. Also,my autocorrection van act weird. Do should you see really weird words,it's my autocorrection.

    So Then, why am i writing ? Just to get it all out. Maybe in the hope people Might finally realise stuff ? (Probably idle hope,but i tried at least).

    So Then, why am i writing anonymous? (You got it, Romana is not my real name, my real same doesnt even sound the slightest bit as Romana). Well, because I dont want to be recognized. I dont want everyone to Know about my past. Yes, i deliberately say past. I was born with treacher Collins syndrome. I deliberately say was. For i consider myself healed from treacher Collins syndrome. Ive deliberately chosen to have many esthetic surgeries to take the look typical to this condition away from me. And im not saying that that is what anyone with a craniofacial disability should do. It's a Very individual choice. But for me, as An individual, that look did not feel like "me". I wasn't feeling myself. I felt like i was born in the wrong body.

    It's like transgender People. They also unfortunately we're born in the wrong body. But that is their past. They should not be seen now as the body they we're born in. That's none of People's business. You see, if I was born in a make body, but now im am female (and i went through the whole transgender proces), Then why would I Tell anyone I was born in a make body ? To be seen as "the woman who used to be a man?". I don't think so. Im a woman now, that's what's count. So the same goes for me. Why would i want to be seen as "the woman who was born with this disability?". I am now who i am, and refuse to be judged by my past. It's private, it's no People's business,unless you are someone who is very close to me.

    But yes, this "past with a disability" was there. There is no magical way to erase it. And therefor i speak up. For there are People out there who's present is now what was my past. Or there Might be people who have a similar past to me, and People are aware of their past (yes, unfortunately,many People are still aware of my past, i cannot cut everyone out of my life because my past is traumatizing, that would be unfair to them, and also to myself,for is cut People out of my life that are Very dear to me. But also people who are not particulary dear to me (nothing against them, they are just people, i have nothing for nor against them) are aware of my past (smalle town,you Know). But to new people i do not talk about my past. No need to stick their noses in it. And also,my past is a trauma for me,so it's ligical i don't talk about it openly.

    Anyway,enough introduction stuff. It was already way too long,i Know. But sometimes when i type i just keep typing (congrats to whoever reads it all,you deserve a medal).

    OH yes, i also jump Very fast from one topic to another while writing, im not good in coherent writing.

    So maybe ill divide my text in different Points so it's easier for whoever should read is to read in Points. So let's do that,ok?

    1. "It's about your face" :

    Aka = super stupid remark. Really, about my "face" ? My face is a part of my body , just like your face is one of yours, thank you. Just say it as it is : "about your disability" or "about your condition". But do not put my face (or any part of my body) together with my disease ,thank you. Thank you for seperating them. I had a disease that affected my face, but my face was not the disease ! It's Rude to assume that ! Don't say that, just because you're scared to say the word"disability " or "disease". Don't make a part of my body another word for my disease. It's shamefull and humilating. My face is ,like any other face,An instrument with which i can see, Taste, frown. My face is a bodypart. My face is not a disability.

    In high school there was a girl who one day said to me "they we're talking about you on the bus". Me answered : "OH, was is positive or negative?". She answered Then :"it was about your face,so i think negative". First of all, stupid girl, if People are talking negative about me ,about something (my disease) i can not help, why on earth would you even mention to me that they we're talking about me? Just keep it for yourself,hearing that they are talking negative about you when you Cant do sh*t about it ,or Cant cobfront them with it (for i did not Know who "they" we're), is just hurtfull and the only thing it achieves is hurting someone. Do if you are planning to say something to someone that Will only Hurt them and to which they don't have a rebuttal, just keep your f*cking mouth shut.

    And secondly : why saying about "my face" just say the word girl, say the word "disease/disability/condition". Newsflash: you Will not get contaigned with it if you say the word out loud. For you it Might be easier to say "your face" , for me, you are reducing my face to a disability i did not choose for !

    2. "I wanted to register you for a makeover tv show"

    Another dumb girl at school. I Mean, what would she think if I said that to her ? It's the same as saying "you're ugly so let them make you beautiful in a tv show and Then i get all the credits for i am the heroic girl who registred you and helped you to bevolen beautiful". First : no one, litteraly no one, wants to be called ugly. All people have a certain level of vanity and pride ! Second : can we please please realuse that a cheesy makeover tv show is absolutely in no way to compare to specialized surgery People with the condition i had or a similar one need ? Third : i don't want to be a poster girl for sensation tv shows. I was a Teenager,for crying out loud !

    3. Im a person, not a f*cking Lego kit !

    My ex best friend (and no, what im talking about here is not the reason for or friendship break up, there we're other reasons for it that had absolutely nothing to do with my condition,but im not going in depth about that,for it would be very off topic). But the thing is, what my ex best friend said what i Will write about Might be not the reason for our break up, i wasn't even angry at her at that moment (ok , i was, but i never showed it for she was my best friend at that time,and People do tend to tolerante a lot more from their best friend),but it was humilating to me.

    Ok, i have prostetic ears. Not many people Know it,and i intend to keep it that way. But when i sleep, i have to put my prostetic ears off. And since i sleept over at hers several times, she knew. After all,she was my best friend Then,so i trusted my secret with her.

    One day, her new boyfriend would come over. I asked her please not to Tell him about my prostetic ears (and she kept her word and did not Tell it), but she did say :"OH, if i told him, he would not mind,he would only think it's interesting". I Mean,all cool and we'll, but hey, i don't have any intention to be "interesting". My ears Might be prostetic,but they are still a part of my body. But interesting, that sounds like im a d*m'n Lego Building kit if which you can put pieces on and off instead of a person !

    (By the way, nothing against Lego, on the contract, Lego is a super cool tot, but im a human and not a Lego kit, so i don't like it when my body is compared to a Lego kit and is labeled as "interesting" )

    (More Will follow )

    Craniofacial Plastic Surgery and Mending a Fractured Soul

    A fractured soul is a broken one. For some of us, from the moment we are born, living in our own skin feels raw and irreparable. Living with restricted airways, our mental and physical effects are heightened; we feel as if we are suffocating without any air to breathe. We are born imprisoned in our bodies, and while we live with the repercussions for life, our parents live with the guilt. As a woman born with a physical craniofacial disability known as Treacher Collins syndrome, I experienced a lack of identity along with the diagnosis. Craniofacial anomalies, the most common birth defects, have significant practical, aesthetic, and societal repercussions. These conditions involve severe internal and external malformations to the face, skull, and body. A child born with a deformity back in the Spartan ages was deemed as a weak and inferior human being. Therefore, children born with birth defects were discarded and thrown off a cliff because citizens believed people born differently couldn’t partake in the protection of their nation. While humanity today has changed its philosophy, at least on the surface, judgment never stops, and awareness is never enough. I had an emotionally unavailable mother who lived in fear of judgment because of my condition. She did anything to “fix” me so I did not reflect poorly on her. People looked down on my mother for having a “deformed child.” Therefore, she tried to have me operated on as young as age 3. However, my doctors refused to touch me until I was 11. I was operated by some of the country’s best surgeons and was on some notable TV shows in the early 1990s. Today, my case is still referenced at major medical conferences worldwide. Cynthia Cherise Murphy as a child. Premature surgical decisions could explain why some of my best friends, also born with craniofacial conditions, looked identical to me as a child. However, these people have become surgically botched after various trial-and-error attempts by inexperienced doctors. Many surgeries occurred due to the parental anxieties of outside judgment and uncertainties of treating these conditions. For some, the damages continue into adulthood because of poor surgical decision-making. Others are addicted to and rely on plastic surgery, believing the more surgeries they have, the more they will transform themselves into the societal standards of beauty. Parents and patients fail to bear in mind the costs of weakening the heart every time one is placed under anesthesia. Before and after reducing craniofacial swelling Many craniofacial anomalies are neglected because people lack knowledge of the distinct characteristic facial and bodily features and the broad range of coinciding abnormalities. We are now in an era where a rapid and comprehensive diagnosis can be quantified with genetic testing shortly after birth. However, the lack of unmistakable characteristic features and the prevalent scarcity of knowledge drive problematic barriers for medical professionals in effectively treating craniofacial anomalies. Competency is a formidable issue because these are irregular, intricate cases, and they are often neglected by providers in lieu of more common cases, which causes an absence of expertise. Facebase, a nationwide database, contains people with each condition where treatment outcomes, successes, and failures are evaluated, and medical professionals and parents can collaboratively assess what works best. However, this is rarely the case because parents remain under-informed, and doctors continue to practice on patients without knowledge or expertise. Traditionally, knowledge of craniofacial abnormalities has been fairly earmarked for medical providers with considerable experience in distinct specialty areas. It is not unheard of that many medical providers in surgery commonly recite, “Judgment comes from experience, and experience comes from poor judgment.” My best advice to parents dealing with a child born with craniofacial anomalies is to wait before rushing toward some quick fix. Quick decisions often lead to quick disasters, far from what any parent would want for their child. Craniofacial conditions are a rarity; it takes time to masterfully attend to the physical, mental, and surgical needs of those born with these birth defects. It is a permanent lifelong condition that will never fully heal itself. Some of the most gifted craniofacial doctors can take the broken pieces we are born with and fit them together beautifully and artistically. However, the art and practice of surgery take strategic planning. Parents need to research and find the best fit for their child because there are many doctors playing doctor. These unqualified physicians have executed more surgical mishaps and disasters than fixes because they lack expertise and proper strategic planning. My world-renowned doctors planned my surgeries months in advance and allowed me months to heal. I had 16+ surgeries over 20 years. Then I hit the pause button and stopped having surgeries for 10 years. I allowed my body to heal and implemented a plant-based diet, improving my quality of life and reducing the swelling in my airways. I worked on my mental health after achieving a Master’s in psychology and found my way to attain another Master’s in public health. Today, I have higher goals as I work to earn a Ph.D. in business and marketing. I am the CFO of two corporations, including a nonprofit, and I have represented people with disabilities on social media and as a model on fashion runways. I am preparing for two to four more surgeries to reduce craniofacial swelling and improve my breathing. I will also receive a set of eye lifts. I recently learned that the medpor implants I had inserted in my cheeks and chin decades ago have seemingly become a part of me because the bodily tissue and implants eventually form into one. It is truly amazing how resilient and brave people born with craniofacial conditions are. However, some of us must realize that we will never look perfect; therefore, we must unconditionally love and accept ourselves. We must put our bravery into surviving the surgeries needed to increase our quality of life. I understand and accept that I was born this way. I rely on the medical system when it comes to medically necessary surgical needs. However, as an individual with a physical disability, I understand that I am responsible for my health. I continuously enrich myself in knowledge so I can make well and informed decisions. I highly encourage craniofacial adults and parents to do the same so that we may live our best lives. Advocates Cynthia Cherise Murphy and friend Candy Zavala with TCS, to left, and Cynthia Cherise Murphy and her best friend with TCS, Lisa Encinitas from the movie The Greatest Showman, to the right.

    Community Voices

    The Grief of Feeling Unloved Due to a Craniofacial Disability

    I’ve heard it all before. “You’re too ugly and stupid to find love. You’re a sub-par undatable set of damaged goods.” These words came from bullies, family members, and people who I thought were my friends. While those words weren’t always verbally said aloud, I felt them, and I heard them, loud and clear. Many look out for deal-breakers and pet peeves when seeking relationships, and one of them is not fitting the ideal standards of physical beauty. Time and time again, I was tricked into believing that people could love me for me despite being born with a physical deformity, Treacher-Collins syndrome. We are often victims of circumstance with a muddy trail of insecurity that follows us everywhere we go. I always felt alone and ugly, even after meeting the love of my life. My life goal was to find happiness and to be content with myself. After all, hopes lost through the mental stagnation of never feeling good enough made it easy to feel alone and blame-shift. I shut the world out, and I just didn’t want to be here anymore. Perhaps the ones that kept hurting me would realize that they were the ones who pushed me to the end. Maybe it would inspire people acting in cruel manners to be kinder. Maybe this is the exact reason why our beloved Katie Whicker is no longer with us. She felt undermined for her true talents and capabilities, which stemmed from her physical appearance. Group picture with Cynthia Cherise Murphy and Katie Whicker at a craniofacial event in 2019. Our community of people born with craniofacial disabilities has lost a daughter, sister, friend, and mentor. I called Katie Whicker the “Matriarch of Loving Yourself.” Katie was one of the strongest craniofacial advocates who shined her bright light to those living in the darkness. When I first met Katie, she was a passionate unordinary who aspired to inspire people to accept and love themselves. Katie stood her ground, and she had no problems expressing her honest thoughts. She told me she knew her worth and knew it to such an extent that she had fought her employer for a raise. Katie had a profound love for animals along with a wide range of skillsets, and she thrived in environments where she could help others. She was a motivational speaker who emanated pure light and love. Beneath the surface of her uniquely crafted face and squeaky mouse voice was a powerful woman who knew what she wanted. I have never witnessed someone who tried fighting so hard to fit into the norms in a beautiful but different way. Katie wholeheartedly loved and impacted everyone she met for the better. For 25 years, Katie fought so hard for life, only then to lose the battle. It was no secret that she endured many physical and emotional pains; she shared her most intimate thoughts on social media with her many fans. Katie became so passionate about living comfortably in her own skin that she enrolled herself into treatment for her alcoholism earlier this year. We shared common ground when it came to numbing those internal pains caused by shallow and surface-level judgments. I witnessed Katie’s inspirational journey as she began to unveil beauty in its truest form. A true and hard-born advocate, Katie Whicker grew tired of people regularly calling her “stupid” and viewing her as incompetent due to her severe speech impediment and physical appearance. She began advocating against plastic surgeries primarily because of the medical mishaps, physical pain, and the very fact that vanity often motivates a person to undergo cosmetic surgery. However, if you flip the coin and wear a pair of our shoes, it is the opposite. Group picture with Cynthia Cherise Murphy and Katie Whicker at a craniofacial event in 2019. People like us, born with cranial-facial conditions, are forced to undergo hundreds of unnecessary surgeries at an early age. Our painful surgeries often stem from a medical necessity, including the immensely painful reconstructing of our skulls and jaws. However, for some, the journey of surgery continues to fit in with the societal norms of beauty. “My daughter Katie has an important message to convey to all parents; she has been where you are. Please at least consider the NO SURGERY option with your child. They don’t need to be made into something other than the perfect way God sent them from heaven,” was posted on Facebook by Glenn Whicker, the father of Katie Whicker. Personally, I can resonate with this statement because I had world-renowned doctors who halted any plastic surgeries until I was 12 years old. Many of my craniofacial friends born with Treacher-Collins syndrome looked identical to me as children; however, it is evident that many of them ended up surgically botched once fully developing in their adult ages. My heart is tender, and I have shed many tears, wondering if I had that one chance to reach out to Katie and ask if she needed a friend. I just can’t express how she felt. In the days before her passing, she lost her best friend and animal companion Zion. Life is sometimes very disappointing when you’re born into the likes of us. Her heart was beautiful and tender, but she did long to be loved and to find that one and only person like I have. We related so much to the feelings of inadequacy. Katie’s father recently posted on Facebook about her passing; he said, “We do not know what went through Katie’s mind, but we suspect that she tried to drown her sorrow by partaking in some unhealthy substance. It was a poor choice, but we are confident she did not intend to do permanent harm. She loved life!” posted on Facebook by Glenn Whicker. I wish I had taken more time to foster our friendship. Katie was sweet and nurturing; she cared to help others before herself. She didn’t judge me for who I was, and she too could relate to how competitive the craniofacial community can be when we should be advocating together in unity. I wanted to do big things with Katie, but my heart and head got lost in translation with significant life changes. I’ll always admire and remember Katie for her bravery. In Memory and Honor of Katie Whicker, The Girl with the Million Dollar Face.

    Navigating Friendships and Business With a Craniofacial Disability

    I was born with a craniofacial disability and grew up experiencing hurtful remarks from my school peers; bullying had me hanging by a thread. This lack of love and support led me to begin collecting friendships from an early age. It seemed every week at school was a new theme; I had a new best friend. I was going through friendships more than your daily pair of underwear, and I was financially paying for it too. We may fail to take notice that this same pattern often follows us into our adult lives. This rare form of a relationship is one we can often attach ourselves too much to if we are not careful. Friendships can be destroyed and then later forgotten, although a piece of you will always hold onto what you treasured. Think before you act, and think before you speak, because not all friends are real friends. A true friend subjectively listens and then gives honest feedback. If you can’t take that, then you should not be in the market for any friendship. We are indeed all flawed human beings, so when something goes down with a friend, it’s best to step back and examine before impulsivity ruins everything you had. Then comes the mean girls talk and gossip. Everything that you had aimed to avoid is now front and center of the stage. You are now the exact replication of every other failed and bad friendship; you’re now in a different category. When this happens, a grudge is being held against you that will likely never die. One of you is likely to forgive sooner, but sometimes it goes both ways. Either way, often, the grudge is so strong that you can’t possibly forgive what was said and how it made you feel. Action is something to consider in friendships; while words can shatter your world, it is the person’s action that denotes their true character. However, people with disabilities who have a history of being bullied may have no sensitivity filter when communicating. You cannot get upset at a friend, who you love, and then lash out at them in the same way that bullies lashed out at you. Words are sharp, and they hurt. These communication types make a toxic combination and show your friend a different side they have never seen. On the contrary, this may happen to you; therefore, the coin is flipped, and perhaps your friend has some soul searching to do. Another possibility is that the two of you are failing to see that it goes both ways. Friendship is an art of miscommunications that need constant fixing. Some require more maintenance than the changing of oil in an expensive car. In that case, you will have to consider if this friendship is really worth your time. We have to remember that a friend has expectations because they trust you to feel how they feel. Leveling out with your friends is not always easy. No matter how significant your friendship is, you still need to allow time for space. A friend cannot think clearly when you continue to berate them over the same situation. Feelings will be even more hurt. However, perhaps they will be resolved if you just wait a few weeks or even months before moving the needle up any further. Sometimes we have to treat our friendships like business relationships if we want any chance at sustaining them. It is important to be honest and communicate from the heart, but do it professionally and in a way that doesn’t come off as offensive. When we are hurt, we can respond negatively; however, just because we feel hurt doesn’t mean we need to reciprocate those feelings either. Despite coming from a traumatic childhood where I endured bullying at school and then sexual, physical and mental abuse at home, I persevered. Today I manage a successful corporation of 85+ students. However, I have still been flawed in the realm of friendships. My first freelance hire was one of my best friends I had met at a previous place of employment 10 years ago. I was so excited to work with my “bestie.” We even unnecessarily invested in four thousand dollars’ worth of technology to get things started in exchange for her first month of training. If you think of any job out there, most require expertise or for you to prove yourself before any significant incentives are even considered, let alone during the “training process.” But this was my best friend, and I felt that she needed to have it all at our expense; in my eyes, it was an investment for the long-term, just like our friendship. It wasn’t until I realized that this situation is no different than when I bought my friendships during my childhood. I had been repeating history without even clearly seeing it. Fast forward to one year later, when it all came to a screeching halt. While we accomplished many successes together, there was a severe lack of communication and then came the hurtful words exchanged. COVID-19 caused my best friend to leave and find another source of income, which I initially understood. But then, some feelings were never expressed, which eventually boiled over between us. In many ways, I feel hurt and betrayed; I am sure she does too. While I have no regrets, I do look back and see that I overlooked my first hire. I lacked the confidence to move forward without needing to “work” with a best friend. I mingled business and play, which may have affected a friendship I truly valued. If I regret anything at all, it is that. Life is a narrow tunnel of lessons that we continuously learn from. People with disabilities who aspire to be entrepreneurs are already in the minority; therefore, making crucial and wise business decisions is critical for success. Keep your “best friends” where they belong, and be fragile with their hearts. We all come from a place of need, so we should demonstrate kindness and love towards each other. Be sure to call and catch up with your friends when you have time; otherwise, you might lose that chance; I know I did. I was so busy running corporate operations and working with my “bestie” that I forgot to follow-up with one of my childhood best friends Shala who just passed away this Saturday. I didn’t even know she was sick. She was so smart; she even had a master’s degree in business. I can’t help but think if I would have taken the time to nurture our relationship meaningfully if things would be different. I guess I will never know, but I have spared myself from any regrets, and I’ll always remember Shala, my best friend who bullied the bullies to protect me. Take the time to nurture your relationships when you can. However, don’t feel in deficit if you aspire to do great things in this lifetime. Don’t hold back, and don’t attach too much to your friends. My last piece of advice is if you are seeking to become a business owner, especially as someone with a disability, “don’t hire your friends.” Otherwise, you just may lose them, and there is more at stake than that if you are not careful. In memory of my childhood best friend, Shala Rosebeary-Williams

    Moving Beyond Plastic Surgery in Life With Treacher Collins Syndrome

    It is not easy coming from a place of hurt and abandonment. It led me to resentment, denial, and anger towards all those with whom I crossed paths. My defense mechanism was to treat people as poorly as I had been treated. I acted spitefully and ungratefully without even realizing it. With pain, sometimes there is no gain, just more pain. There was no sense of normalcy in my childhood. I was born with Treacher Collins syndrome, a physical deformity that affects the bone structure and appearance of my face. It hurt to know that I was born with a face that my mother could not love. I was sandwiched in between experiencing daily traumas consisting of sexual, physical and mental abuse at home, and then at school, I was bullied by my peers who hated me because of my face. I buried my past and the pain, and I refused to come to terms with what had hurt me the most. I created personas and acted in desperation. I didn’t even realize I was living a complete lie. Starting at an early age, I endured over 16 complex and painful reconstructive plastic surgeries. The physical pain of these surgeries allowed me to numb the emotional pain. I became addicted to the outcome of surgery and the sympathy I would gain. Every surgery would foster a different outcome, and it felt good. I had once been without cheekbones, and then suddenly, I had them implanted. It was an exhilarating feeling to see more beauty after every scar. Having so many surgeries gave me an emotional high and led to me wanting more of them in the name of vanity. I became so focused on external beauty because I felt I would be more accepted and loved. The emotional inadequacies in my life fueled my negative thought patterns, which led me to experience more problems. I made that many more mistakes and some of them came in the form of surgical mishaps. Doctors had warned me about what could go wrong, but my hunger for surgery in exchange for more beauty outweighed their opinions. My goal was to become a model. I wanted to prove I was worthy and beautiful. I thought that I could be one of those gorgeous models on the cover of the Vogue fashion magazine. I fantasized that maybe I could be the one to redefine true beauty. Things didn’t necessarily steer me in the direction I had initially planned. For years I felt entitled to victimize myself because I was the one who was wronged. My guarded heart showed an ugly side that I couldn’t mask. I was cold, and I lacked sympathy for others because it was impossible for them to relate to the traumas I had endured. Deep down, I felt sorry for myself, and I made excuses to act recklessly. The more hurt I experienced throughout the years, the harder and colder I became. I did my best to carry on and focus on what I wanted. When I was 24, I boldly walked into the stadium to audition for America’s Next Top Model, and I was laughed at and ridiculed by the other girls. This made me feel “stupid,” worthless, and most of all, ugly. I stopped watching my favorite television show, and I began focusing on going to school and building my career. I had come to terms that I couldn’t be the type of beauty that the fashion industry requires. This carried with me into my 30s until I realized that I wasn’t doing myself any justice by holding onto what was no longer serving me. I realized that I had disconnected from myself and the childhood abuses by masking and concealing them through numerous plastic surgeries. This affected my ability to love others, let alone love myself. When I unsurfaced the pains and dealt with them, I found a different type of beauty that no one could take away from me. I embrace that my past challenges didn’t break me because now I know they made me. If I knew then what I know now, I’d see that beauty comes in different forms. Recognizing external beauty is an excuse to take someone at face value without knowing what is inside of their heart. I always wanted to be loved for my heart and not pitied for my “ugly” face. My circumstances have now changed after ridding my life of the toxicities I had unknowingly created for myself. I have not had surgery since 2013, and I do not plan to have any future surgeries unless they are medically necessary. Also, I am proud to say that I have been on the modeling runway eight times for the Kiss the Monkeys celebrity fashion events. I am blessed to have shared the runway with three other disabled models representing inclusivity and true beauty. While I had not planned to model again, it automatically manifested back into my life once I began fully loving and accepting myself. It is not easy to love yourself after enduring a lifetime of pain, but now I know the impossible is possible if you take action to love and accept yourself.

    Learning Self-Compassion as a Bullying Survivor

    The misuse of power is incredibly prevalent in today’s society. As someone born with Treacher Collins syndrome, a craniofacial genetic birth defect that affects the bones, muscles and soft tissues of the face and skull, I know what it feels like to be humiliated and deprived of your dignity daily. As a child, I was physically, mentally and socially ensnared by the hurtful words and actions of my school peers. Even teachers treated me differently because of my facial malformations and severe speech impediment. Often, I’d be in tears as I ate lunch alone in a bathroom stall or janitor closet while pulling out the spitballs from my hair. Equality was a distant hope as I was continuously chosen last for school projects and P.E. activities. I was the subject of cruel passed notes which inevitably ended up in the hands of the teacher. I can still hear the chuckle that preceded the note being tossed into the trash. To dull the pain, I embroiled myself in writing dark poetry and listening to gritty music. I made the promise that one day I’d prove them all wrong. To date, I have undergone over 16 medically necessary, reconstructive plastic surgeries. These painful operations aimed to repair and replenish the fundamental facial and dental features I was born without. I was often placed on home studies which kept me out of school, a blessing in disguise. It kept the suicidal ideations at bay, and it gave me one less problem. At home, I had an emotionally unavailable mother which continued the cycle of abuse. On almost a daily basis, I endured one or more forms of physical abuse, bullying, psychological trauma and sexual molestation by my stepfather, who worked for the government and was a registered sex offender. I grew up with a younger stepsister who was put on a pedestal and prioritized. I envied her status and wasn’t always the nicest big sister. On rare occasions, we had limited visitations with my six angry older stepbrothers and stepsisters, who resided in the foster care system. To them, I was the black sheep who had lived a privileged life. If only they knew. I was always seeking to fill my deep voids. I acted out in desperate attempts to break away from the abuse at school and at home. I longed for a mother, father, sister, brother or friend who could understand what I was going through. At age 12, I ran away to my biological father’s home, only leading myself into a turmoil of drugs and incest, which ultimately landed me in a mental institution and then juvenile hall. My efforts continuously failed as I sought love from others in the wrong ways. While I was not promiscuous, I pretended to be. While I did not fit the ideal beauty standards, I used makeup to mold and manipulate my appearance. While I was not rich, I found ways to make money. I bought as many friendships as I could. While I did not have a family, I surrounded myself with as many wise elders and mentors as I could — until they were taken from me, either because they passed away, or we were forced to move or I was banned from seeing them. I was bullied, beaten and stripped of any ability to have friends. My only escape was walking out in nature, writing, reading and daydreaming that my life would be better one day. I hoped that God thought I truly deserved to be loved. As a tribute to Bullying Prevention Month, I remember how isolated, depressed, scared and worthless I felt. Technology was not as advanced in my childhood as it is now, but I did experience cyberbullying firsthand in my early adult years, which left me feeling unworthy and devastated. My faith and unquestioning belief kept me going through it all. As hard as it was, I believed in a better outcome. I replaced any negative with a positive, and I did what I could to keep my mind stimulated by learning and developing new skills. I did my best to find the silver lining. Stan Lee of Marvel Comics had the life motto “Excelsior.” This maxim means there is only one way up, regardless of the turbulence experienced along the way. It wasn’t until my early 30s that I realized I was not brought into this world to be a reflection of perfection. The mirage of false beauty ideals only hinders us from understanding what truly matters, which is self-love and compassion. If I had known this when I was younger, perhaps it would have prevented many of the hardships I suffered. I would have felt more loved and secure. I might have been stronger and wiser. Self-compassion should be a natural extension of who we are and how we treat others. Many people who bully and harass others are battling their own demons. It’s hard to see the pain behind the eyes of others, let alone deal with your own. Be kind to them too, but stand your ground and show them your own worth. If you ride the tide, I believe you will survive and thrive. I found everlasting love in the most unlikely of places, and today I focus on accepting myself. Whatever you are going through, please remember with love and conviction, it only gets better. I promise.

    Modeling With Craniofacial Disabilities

    I was born with Treacher Collins syndrome, a complex craniofacial condition that causes facial malformations and led to crushing insecurities. For 30 years, I felt trapped by the childhood bullying, physical abuse and sexual traumas that plagued my life. As a craniofacial awareness advocate, I receive so many messages. It’s arduous to keep up. Some of them can be depressing. Many local and international mothers reach out to me after having a baby born with a congenital craniofacial condition, hoping I can find someone to adopt their child. They feel they cannot provide for their child financially, mentally and physically. Additionally, numerous young teenagers reach out to me, stating they feel so ugly and believing they are “undateable.” The modern ideals of beauty can lead to obsessive facial rumination. When your face lacks “normal” symmetry, it can leave you feeling lost and without identity. Body image, facial beauty and bullying go hand-in-hand. It’s a constant battle between believing you are beautiful and trying to prove it to others. Picture Credit: RAW: natural born artists with modeling coach and celebrity fashion designer Vero Cruz at Amodel and AMO La Cruz. Hair by Beauty by Klaudia and makeup by Jessica Morales, Marilu Olivarez and Liz Bandan As adults, we transition into maturity and understanding of our conditions, but that doesn’t take away from the fact that we’re often still taken at face value. This feeling of lack never goes away, but I’ve learned to confront people with kindness, whether it’s smiling back or even starting up a conversation. A facial expression can indicate a million different reasons why another person is observing your beauty, and you can’t always tell the difference between judgment and curiosity. In my experience, you must create and maintain the belief you are beautiful to manifest the feeling from within that you wholeheartedly accept the way you were born. Should you find yourself in the face of judgment, realize that life is too short to focus on other people and their problems. Often when someone is taking the time to judge or bully another person for their physical differences, they are dealing with suppressed traumas and pains buried deep inside. I believe God made you beautiful just the way you are, and if you master your inner self and physical health by thinking and eating healthy, your mindset can completely change. You have talents, and by failing to recognize and honor them, you may be missing out on grand life opportunities. Gratitude Credits: Picture by Dumisani Maraire Jr. at Top Flyt Media representing craniofacial disabilities on the runway wearing Luchy Manjarrés Cohen fashion designs with celebrity runway coach Vero Cruz at Amodel at Kiss the Monkeys Beverly Hills Ball | Hair by Alicia Araiza daughter and Ines Contreras | Makeup by: Andrea Colors and Dann Eliz Sometimes I get anxiety because I wish I could help the people who reach out to me beyond the words of advice and resources I provide to our community on social media. I am so understanding of the emotions behind the feeling when you want to replace your face. Feeling lost in a world full of restrictive medical resources, beauty standards, and materialism, one born with a congenital disability can often feel discounted. Like peeling the layers of an onion, the pain is deep, and it goes to the core for those born with craniofacial disabilities. The further we get inside, the more we’re trapped in our heads agonizing about how people are viewing us from the outside. It’s a horrible and heart-sinking feeling when you are taken at face value. Makeup by Jacky Tai at Kiss the Monkeys Fashion for Compassion Event It took years of mirror work after enduring traumatic childhood abuse at school and at home, but today I’ve learned how to embrace my face. I used to feel “ugly” and “stupid,” but now I revel in my educational studies, and I go out with my hair up in public with my little malformed ears exposed. I don’t plaster my face with makeup or go out hiding who I am, and I no longer buy friendships for love or acceptance. It feels exhilarating to just be me. I’ve failed many classes, and I’ve dropped out of school and college. I picked myself back up, and now I’m pursuing my second Master’s Degree in Public Health. I had many unkind boyfriends, but I found the love of my life and we’ve been married for 13 years. I was laughed out of an audition stadium in Los Angeles for America’s Next Top Model, but 10 years later I went back to the fashion industry and found amazingly accepting people who view me as a role model, literally and figuratively. Gratitude Credits: Picture by Nelson Photo Images representing craniofacial disabilities on the runway wearing Luchy Manjarrés Cohen fashion designs with celebrity runway coach Vero Cruz at Amodel at Kiss the Monkeys Beverly Hills Ball | Hair by Alicia Araiza daughter and Ines Contreras | Makeup by: Andrea Colors and Dann Eliz You are beautiful, you are kind, you are smart and you are worthy. My goal is to bring more of us together and not be hidden behind the scenes anymore. I’m an avid philanthropist and supporter of various advocacy organizations and would love to have additional inspirational people, material and means of support to include in our upcoming speeches and media interviews. Our group of craniofacial advocates from the FB Craniofacial Support and Resources group have launched a viral #BraveFaces video campaign on Facebook supported by Dr. Justine Lee at UCLA Mattel Children’s Hospital. This campaign is open to anyone in our community who is interested in voicing out their beauty. Gratitude Credits: Picture by Dumisani Maraire Jr. at Top Flyt Media representing craniofacial disabilities on the runway wearing Luchy Manjarrés Cohen fashion designs with celebrity runway coach Vero Cruz at Amodel at Kiss the Monkeys Beverly Hills Ball | Hair by Alicia Araiza daughter and Ines Contreras | Makeup by: Andrea Colors and Dann Eliz

    Modeling With a Craniofacial Disability

    Living with a craniofacial disability can impair your physical and mental ability to believe in yourself. It can debilitate you because it feels like no one believes in you, no one hears you, and no one sees that you even exist. I was estranged and alienated by my family and friends because of the way I was born. I had a knack for being diligently smart in all of my classes, but I was more accepted and popular when undermining my abilities just to “fit in.” I didn’t believe in my ability to succeed because I lacked true love and support from those I chose to surround myself with. I was so desperate to be in the company of acceptance that I walked right into a stampede of turmoil. I had no identity, so I created many identities in efforts to find myself. I believed that my face would immediately disqualify me for a career, so I overextended my generosity to help others at the expense of my dignity, nearly costing me my life and marriage. It speaks volumes when you’re so lost that you help people take advantage of your kindness to avoid rejection. When I went out with my friends, I wore a barrage of makeup to hide the scars, and I made any excuse to wear sunglasses. I took on a persona that wasn’t my own, not realizing I was dying inside. Meanwhile, my husband Thane was deteriorating at home from PTSD, agoraphobia and traumatic brain injury he incurred while in the United States Marine Corps (USMC). I could not see his pain, let alone deal with my own. I was marinating in my past traumas, guilt and fears, feeling so displaced in this world we call home. I vividly remember the day that changed the course of our lives. I walked into the front door, and my husband was so psychologically overwhelmed he tried to kill himself right in front of me. Trauma, fear and guilt present mental and physical barriers to live your life authentically. If you can’t show everyone who you are without fear of judgment, then who are you? You may be living a faceless life in a facade of lies and not even know it. My poor friendship associations and reckless actions brought forth consequences I could not ignore. I realized I could no longer live a false and faulty life. I needed to look in the mirror and deal with my malformations “face” on. I needed to accept myself and provide unconditional love to the man who chose to marry me. I decided I was born this way for a reason, and instead of asking God why, I saw the opportunity he’d given me, and then I started living by my why. I was born this way to help others in the craniofacial community to weather the storm and unveil their talents. Thane believes he was dealt grave challenges so he could represent an embodiment of change to help others in the military community. He is a survivor, and so am I. If you are honestly willing to change, I’ve found people start seeing you for you. Instead of victimizing yourself, you must learn how to embrace yourself. I believe you can heal through finding your God-given talents and utilizing them to empower others. Wear your story proudly and share it so others can be inspired to model you. Be an inspirational incarnation of change by always seeking to improve yourself physically, mentally and spiritually. Execute your right to invest in your physical health and heal yourself. Be an example to others and yourself. Live for today and in the now. It’s time to get out of your head and start following your heart. I chose to persevere through my fears, and now I’m accomplishing things I’ve dreamed of since I was a child. It takes tenacity to build character from within and accomplish success. I’ve learned that the beauty standards in the fashion and modeling industries can include people with disabilities, but like anyone else, it must be earned. There are limitless opportunities for you to believe and achieve. Believe in yourself and work that runway because you are indestructible.

    Accepting My Craniofacial Disability

    Today, I can look into the mirror with confidence and without the fixation of vanity. I see a woman who has overcome internal and external adhesion scarring caused by childhood physical abuse, bullying, psychological trauma and sexual molestation by my government-employed registered sex offender stepfather. I’ve survived over 16 multifaceted surgeries involving the repair of various facial deformities I was born with, and for the longest time, I believed I had a face even my own mother couldn’t love. For 31 years I damaged my body taking over 14 prescription drugs, primarily because the doctors said I needed them. I self-sabotaged often, and I did more than my share of self-hate talk. I made a few attempts to end it all, but all the while I kept seeing the same clouded purpose I couldn’t make clear. I was living in a state of denial as a chemically-induced robot, raging alcoholic and chronic cigarette smoker despite having severely restricted airways. I lacked any concept of what health entailed, and I hated myself, but deep down inside I still knew I deserved better. I grew up very angry, guarded, and I formed any identity I could find. I did my best to over-nurture all of my relationships using laborious favors, money and other material items that I thought would secure our future. I became addicted to the idea of obtaining the physical appearance of the beautiful women I spotted in various beauty magazines through means of unnecessary surgeries, some of which led to botched circumstances, including my current need for a second major jaw surgery. Despite being labeled as a high school and college dropout, I chose to persevere by pushing myself to pursue multiple college degrees in various fields such as law, criminal justice, forensic psychology, and general psychology. The act of learning something new has always stimulated my mind. I am now pursuing a second Masters in Public Health. I’ve held over 60 jobs, most of which were in discriminating circumstances that I ran from. However, I’ve never been terminated, and one of the best jobs I’ve held was at one of the leading, largest law firms in Nevada. Today, I do not allow my disability to define me. I am proud of who I am and how far I’ve come. I appreciate every good and bad experience. Not only have I gained profound knowledge and wisdom, but I have come to realize I am worthy. I didn’t endure all these hardships for nothing. Many of us hold onto our emotions like a tight ship. We are hurt, damaged and impervious to pain. Now is the time to allow vulnerability to open your heart so you can find the real you. Like a rock rose, you can thrive through neglect. While it took many years of falling down and getting back up, I came to the realization that all I ever needed was to take the time to love, nurture and discover myself underneath the appearance of my “face.” I needed to be vulnerable and honest with myself before I could be of any value to anyone else. Once you identify and release what’s really holding you back, you can then begin the repair process through means of extensive mirror work and self-realization. It doesn’t matter what traumas you’ve been through, you are valuable and you deserve the very best that life has to offer you. Your story has the immense power to heal another human being. Share it and wear it proudly. I’ve been happily married to my husband Thane for over 12 years, and together we found a wealth of health through an organic plant-based vegan, gluten-free lifestyle. My once 30+ medically documented physical and mental illnesses have since dissipated, and my husband even reversed pre-diabetes and obesity. This led to the formation of our successful wellness business Assuaged. Today I’m grateful for all the blessings, and I welcome challenges. I believe there is always a purposeful silver lining to all life experiences. Find what moves you, head towards that direction and never look back. I am strong enough to love myself and to face life’s trials and tribulations. Every day I courageously persevere in a state of gratitude.