Dear Special-Needs Parents: We're Being Duped by a Faulty Healthcare System

Cynthia Murphy | Craniofacial-Vegan Activist |

Cynthia Murphy (Treacher Collins) and Sophie (Pfeiffer Syndrome)

Have you noticed the increase of chronic illness among children and adults with disabilities? I’ve seen countless families torn apart and derailed after being left on the trail of devastation. Sadly, many of these grief-stricken people have been affected to such a degree, all ties have been broken, and now their children are no longer with us.

It’s heartbreaking to bear witness to these parents trying to cope with the death of a child while longing for what should have been. A parent’s worst fear is outliving their children. It’s even especially painful for these families living with immense regret and guilt that they didn’t do enough.
We are often left to suffer health disparities due to craniofacial anomalies, a rare genetic disease that causes severe internal and external bodily malformations. Chronic illnesses are inevitable.

The reality is that we’ve been deceived and failed by many of our own specialist doctors within a misleading healthcare system.

I first noticed the staggering increase of child craniofacial-related deaths last year while assisting Dr. Justine Lee of UCLA to gather participants for a study involving a rare genetic craniofacial condition known as Saethre-Chotzen Syndrome.

I increased my networking efforts by joining hundreds of groups and amassed my friends list to nearly three thousand. I’ve had personal conversations with almost everyone, and I don’t add friends I can’t verify. However, I’ve learned the tragic challenges that many of these shattered families face.

R.I.P. Kip Ryder (Saethre-Chotzen Syndrome

Every day when I open my Facebook, generally the first thing I see is a child suffering from chronic disease attributed to their craniofacial disorder. In moments of apprehension and fear, parents often post their experiences, including graphic images. They reach out in hopes of securing guidance from other parents who’ve endured the same experience.

Many parents are aware of the hundreds of craniofacial support groups available, and so they utilize them to help answer questions that their doctors won’t.

Mother Beverley Harry admits that a nutritional diet led the way to excellent health for her nine-year-old daughter, Becca, who was born with a rare form of Crouzon’s Syndrome. “It’s been a journey fighting doctors for information about nutrition because it goes against their practice and they aren’t knowledgeable on the subject,” she says. “I chose to take control of my child’s health and ditched doctor care, and I only utilize our medical doctor when needed for surgeries, etc.”

Beverley affirms that it’s our responsibility to look after our children’s health. She’s had numerous doctors misinform her and prescribe ineffective and even harmful medications. Things have dramatically improved since changing her daughter’s diet including the use of pure colloidal silver, a miraculous naturopathic mineral healing agent.

Becca now no longer needs physio or occupational therapy as she’s gained tremendous strength, and all development delays have significantly improved.

I was born with Treacher Collins Syndrome, and I’ve also been a victim of this flawed healthcare system. October 2015, I nearly died in the Utah Mountains landing myself in the Salt Lake City Hospital for a week. I was found blue and foaming at the mouth, and after the incident, my oxygen levels dropped to the low sixties during my sleep. Doctors couldn’t figure out what was wrong, so I was discharged with a severe sleep apnea diagnosis.

I’m awaiting a second major jaw reconstruction surgery due to severely restricted airways and because the first one was unsuccessful. I was informed that the first jaw surgery failed because I was too young and undeveloped at age nineteen.

One year following my near-death experience I became plagued with several chronic illnesses including eye infections, acute infectious sinusitis, digestive issues, enlarged spleen, oozing Baha infections, headaches, constipation, hemorrhoids, chronic fatigue, and progressive periodontal disease. Also, I have four braces, for my wrists and knees due to advanced arthritis and problematic muscle and ligament pain involving cracking and popping joints.

One of the most significant challenges I’ve overcome is suffering from four to six monthly chronic bladder and yeast infections. At one point, I was on my menstrual period for nearly two months.

That is when I discovered that prescription drugs are incredibly detrimental to the body.

These pills are not natural earth substances. They are harmful man-made compounds that are far from curing illness. The acclaimed documentaries American Addict reveal the pharmaceutical trade and how many Americans are being affected today.

Last year I made a choice to walk away from all prescription drugs, and my husband and I decided to adopt herbalism and organic vegan diets. Both of us endured different illnesses. My husband, a disabled USMC veteran and PTSD sufferer, was diagnosed obese and pre-diabetic, and I was taking more than fourteen prescription drugs for numerous ailments including depression. Nothing worked, and I felt so sick that I couldn’t function. I relied on narcotics for pain and anxiety. For years, I had been questioning why every prescription gave me more problems. One medication regularly led to three more.

I’ve accumulated so many pills over the years that I could submerge my entire body with them, literally.

I felt my body failing and my mentality slipping while being trapped in a clout of destructive thoughts. I was even headed towards a hysterectomy at age thirty-one, because of birth control pills I’d taken for over fifteen years.

The quality of my life has vastly improved since I’ve discontinued taking medication.

I’m here to tell you that we live in a sick care system that is devised as a complex maze that has us clambering out to referred specialists who can’t answer our questions. They deny nutrition and instead use the power of their pen.

This process leaves us feeling exhausted, especially when the costs associated with taking time off work and traveling far distances drain our bank accounts.

Many of us are startlingly aware of the health epidemic taking over our country, and it’s not just the craniofacial community either. It’s America. Our country is ranked as having the lowest food qualities in the world. There are toxic chemicals and GMOs allowed in our foods that other countries don’t allow.

This particularly affects us in the craniofacial realm because naturally our bodies are more sensitive. However, make no mistake, the ongoing sick-care epidemic is affecting everyone everywhere.
Evidence of this has been documented in the groundbreaking films What the Health, Forks Over Knives, and Hungry for Change, all available on Netflix.

Please take some time to educate yourself on holistic health practices and organic veganism for the sake of discovering complete wellness for you and your children. We deserve better than this, and it’s during these times we need to support each other the most.

In addition to my advocacy for craniofacial differences, my husband, Thane, and I built a charitable reference and recipe app named Assuaged to help guide families find safe foods and products to buy. We founded Assuaged on the concept of the Blue Zone movement and in the region of Loma Linda, California—one of only five geographical areas in the world and the only one in the United States.
Research studies and several news reports have established that blue zone residents maintain supreme health and live past the age of one hundred.

We are passionately seeking to bridge the gap between healthcare and self-care to meet the needs of healthy living as a method for longevity. We’re going beyond charity and unifying people through love and compassion.

Assuaged is now available to download for FREE via iOS.

Cynthia Today at Optimal Health | The Murphys Happily Married 11+ Yrs | Thane, USMC 2004

Craniofacial Conditions and Chronic Illness

Wow, we've been receiving many applications for the Cochlear Baha hearing aid giveaway. Please apply if you have a #craniofacial condition and are in need! You can submit an entry following the link at the end of my new article. 💜
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If you have a chance, please do read it. I've included significant health information backed by personal experiences, interviews, medical studies and movie documentaries.

What the Controversial 'Wonder' Publicity Campaign Demonstrates About Craniofacial Equality

I understand why many are offended by the “Real-life Auggie” campaign being promoted by the film “Wonder,” adapted from R.J. Palacio’s New York Times bestseller of the same title. People feel as if they are being presented as a circus animal or behind a glass cage. When I first heard this metaphor, it sent razor-sharp shivers down my spine. We are people, not commodities.

While I firmly believe there is no ill-will intended by this campaign, it does not send the appropriate message. And it’s painfully excruciating to hear how this affects others. My friend and advocate Ann Piesen, born with Treacher Collins Syndrome states, “I’m concerned as it creates the impression that I’m being observed. We are not a novelty because of a movie.”

Initially, all I could think was, what is happening to our society and why haven’t we reached a level of mainstream equality yet?

I believe that this film has a powerful opportunity to raise much-needed awareness, and I’ve become grateful for its existence through the many relationships I’ve formed during its promotion. It’s natural for viewers to want to meet real people, because that’s how we can watch and authentically relate to the truths portrayed on screen. Personal experience is reality, and we can’t lose sight of that.

I’ve been advocating for awareness for over two years now, and I regularly speak with several families online who are hesitant for any craniofacial organizational involvement due to several different factors including fear of exploitation, further stigmatization, and money. I’ve retained the “Erin Brockovich” label in the craniofacial community as I work to provide valuable information, connections, and resources while maintaining confidentiality with these families, many of whom I carry meaningful relationships with. Most are aware that I work strictly as an awareness advocate and I do not promote fundraising or self-gratifying surgeries.

My goal is to foster community collaboration and awareness efforts so we can enact the real change needed.

I support many organizations for their awareness efforts, because without them we wouldn’t be here today. I am especially supportive of the annual retreats and events provided by the Children's Craniofacial Association. I have close friends now that I wouldn’t have had before.

While I don’t see any intentional acts of degradation in the campaign for of this movie, I understand why some find it offensive. Many seek to protect their children and to feel equal to everyone else. The craniofacial community is often sensitive, and rightfully so. We must collaboratively affirm our awareness actions and seek to protect each other in a compassionately equal and logical manner.

Our faces may reveal a physicality some can’t understand or relate to, but we mustn’t forget to express that we are people too. Like anyone else, we have thoughts and feelings deeply connected to the roots of our souls. We’re unique and competent individuals seeking to passionately experience our lives. Many of us have impressive educational skills and qualities that are missed because we’re often taken at face value.

Several medical research studies document that children born with craniofacial abnormalities typically have average intelligence. However, due to widespread stigma, too many people assume otherwise. There is so much value, worthiness, and beauty beneath the surface of our faces.

I can easily name dozens of individuals born with mild to severe craniofacial anomalies and their success stories. These individuals are government employees, writers, doctors, models, therapists, actors, educators, artists, singers, mechanics, nurses and more. We’re here to show everyone that we are not the stigma of our disability or defined by incapabilities.

We have exceptional talents within us all, but we must fight to find them together. We must supersede our fears and act bravely to accomplish what we desire in our lives. No fictional movie or book can achieve what we can together in the form of our collective voices!I hope you can resonate with my words because we're all in this together.

For more information on our collaborative efforts in raising further craniofacial awareness, please join us on Facebook at Craniofacial Support and Resources.

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READ: A recent medical study 'Children with craniofacial conditions face most difficult social pressures in elementary school' research by specialist Dr. Justine Lee of UCLA Mattel Children’s Hospital
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Published via The Mighty
Read More Articles written by Cynthia Murphy
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Article references 'Wonder' the book written by R. J. Palacio and Lionsgate upcoming film starring Julia Roberts, Jacob Tremblay and Owen Wilson

Treacher Collins Syndrome Weight Loss

I couldn't sleep so here goes another video on the subject of weight loss from me to you.

Craniofacial Diaries Deep Thoughts

Making the switch to an all vegan diet has dramatically changed my life for the better... I wish I knew the importance of health 30 years ago. I've never felt so spirituality connected and healthy in my life. Things I failed to see before, I see now. I'm not as emotionally fragile. I used to need people who never needed me to begin with. I feel emotions much more intensely unlike before, but I like it better this way. I'm not blind to any negative energies that try evading my space. I only care to know moralistic and loving people. Today I'm happy and I feel content with being me.

Overall, I feel progress, but I must admit that I'm still frustrated. I'm not quite there and I do fear that it will worsen, especially if I don't gain some weight soon. I'm 95 pounds at 5'5. I know I'm not alone, there's more of us out there who are enduring the same symptoms. Fear not judgement. Share your experiences. Knowledge is power.

I need strength in my bones. I feel very weak. This is so not me... The bones in my legs, arms and feet regularly pop, and it's not comforting either. I regularly use various heating pads (praying they don't catch fire) and KT tape which both help me tremendously. A nice bath in Epsom Salts is comforting at times too. I have two knee braces and two wrist guards for each wrist that I often wear. My right hand moreso than the left. My tailbone is very bony and uncomfortable to sit on for long periods of time, especially during driving.

You can ask anyone who really knows me that home is not where you'll always find me. I love going out and experiencing life, even if I'm a lone ranger when doing so. I miss nature. This just isn't me.. I'm confident I'll find some answers soon. Meanwhile, I'll be sure to share everything with you too. ❤

Why We Often Lie About Intimacy When We Look 'Different'

When speaking with a friend recently, I shared with her that when I met my husband, I lied to him about the number of partners I had been intimate with in the past.

“Of course,” she said. “We all do that. Not even my husband knows how many guys I’ve been with, and it’s really none of his business.”

“No,” I told her. “You don’t understand. When I got with my husband, I told him I’d been with 13 men before him. It was really just two.”

“Oh? You lied the other way?” She laughed and then grew serious. “Oh, Cynthia,” she said. “You lied because you wanted him to think you were desirable.”

Exactly.

At that time, I had zero confidence in myself, and my insecurities were at the maximum capacity — not to mention that I had just dropped out of college. Those are not attractive qualities if you ask me. With that said, I didn’t think I had much to offer him besides my love, affection, and honesty. With my promising number of intimate partners, I had hoped that would be enough. But there are a number of reasons why I lied.

I had two semi-lengthy relationships before him, but the compatibility just wasn’t there. He knew that. What he didn’t know was that all the guys that I had claimed to be with before barely held any weight and maybe involved a few kisses, cuddling at most.

There was no intimacy.

So I might have stretched the truth a bit. My intent was simply to better my chances at finding love without judgment. I thought he might have concluded that I was ugly, and I honestly didn’t need further clarification on that.

A common denominator of craniofacial differences are the vast insecurities and lack of confidence that we have the ability to take part in anything that is greater than ourselves. Some of us are judged on the inside just as much as we are on the outside. We become accustomed to often rejecting others before they have the chance to reject us. It’s a defense mechanism. But what hurts, even more, is that in rejecting the chances of finding love, you can’t possibly know what the infinite possibilities are. To do that, you must just learn to be yourself, at all times, regardless of your fears.

Cynthia and her husband.

When I met my two ex-boyfriends online, it was much easier to hide behind a screen and build a relationship. Neither one was aware of my facial differences until we met in person. I came to the realization that the internet was the only way I could market myself and find a relationship without judgment. When you have physical differences, you are not within society’s realm of “normal.”

Thus, dating, beginning new relationships, and finding love can come with an extra set of challenges. When dating, we try to fit into the norm as much as possible. Your face is one thing that cannot be hidden in plain sight, however. If, like my mother, you have one leg drastically smaller than the other, you can wear pants to hide what you don’t want others to see. Your face is just there.

So why do many of us with facial differences often lie about the number of partners we have been intimate with? In my case, I felt it made me look more desirable and more lovable. I’ve talked to other women with craniofacial differences who have done the same thing. Admitting you’re less experienced, let alone a virgin, might say that you’re not relationship material — that you are simply not attractive enough.

The truth is, I did date several guys on the down-low and some very briefly at school. The short-lived public relationships I experienced at school were some of my best days. Each one lasted only until the guy realized that he might have been in the undesirable category himself, and hanging around the “ugliest girl” at school would all but decrease his chances of finding someone up to his standards. I often overheard snickering and conversation in the locker room during P.E. class. The girls would make fun of my willingness to do homework assignments for guys and for nothing in return, except disappointment. I thought if a guy saw my intelligence, then maybe he would look past my physical differences. For that, I was bullied even more. It seemed like the more I tried, the more ammunition I was giving others to hurt me.

If only I knew then what I know now, I would have saved myself from much heartache, despair, and various educational and career setbacks.

Our choices define our character, and that paves the way to the future. If you are going to break the cycle, you must improve your behavior and negative thought processes to avoid drowning in them.

Without self-love and care, the probability of finding love, let alone happiness, is slim to none.

Don’t overcompensate for what’s not there, build on what is there. Take full accountability for your own life. Be real and authentic with yourself.

Despite the emotional pain that my craniofacial differences have brought me, today I feel liberated and happy. My husband and I just celebrated 10 years of a very sacred and blissful marriage, and we continue to strengthen and maintain our companionship by actively engaging in love, honesty, and communication. If it were not for my husband seeing beyond my face and for my heart, we wouldn’t have found the incredible love we share today.

I am a strong individual today who doesn’t seek anyone’s approval.

I am who I am, and you can be too.

Article originally appeared on The Mighty, a website where people with disabilities, diseases and mental illness share their stories.

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