LinkedIn

Showing posts with label birth defect. Show all posts
Showing posts with label birth defect. Show all posts

Thursday, March 22, 2018

Elyse- Craniofacial Apert Syndrome


The Cosico's young daughter Elyse was born with a rare #craniofacial condition called Apert Syndrome.  The syndrome is characterized by abnormal skull development, fused fingers and toes, and some facial deformities. Elyse faces multiple hospitalizations and surgeries, and will be the recipient of this year’s “Taste of Union” event to be held on Thursday, April 19.  The “Taste of Union” annually showcases local restaurants and food vendors to benefit an individual or family in need. https://goo.gl/Kv2V6H



attachment

Thursday, November 2, 2017

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. 💜
.
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.



Monday, October 16, 2017

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.


-------
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
-----
Published via The Mighty
Read More Articles written by Cynthia Murphy
----
Article references 'Wonder' the book written by R. J. Palacio and Lionsgate upcoming film starring Julia Roberts, Jacob Tremblay and Owen Wilson

Monday, September 11, 2017

Craniofacial Differences or not - Make a Moral Choice and use your Voice

Do you believe in energy? I do. I believe that everything we surround ourselves with including music and people imparts within us. Do you believe in signs? I do, they’re everywhere. We’re surrounded by a loving light, my friends.

I’m not really into being a celebrity fan unless there’s meaning. I’ve met countless celebrities growing up in Big Bear while working the luxury hotels and ski resorts as a teenager into adulthood. Personally, I think celebrities are overrated, but not the inspiring ones. You know the influential people who are trying to do something about the ugliness out there in the world? Stuff is happening right in front of our eyes, but we’ve been blinded, my friends.

Look beyond the news, and you will find what I’m talking about. Nothing is being hidden from us; the deception is in plain sight. We're seeing more cases where causes of immorality and #charity are being combined and defined together - I'll get to that later on.

A few weeks ago I learned of the harsh publicity Taylor Swift endured. Terrible things were said about her. One thing that gravitated me towards her is how she took a stand for our rights, as women and many other things. Abuse is #abuse, and it should never be tolerated. If you don’t recognize by now that we the people are responsible for standing up for ourselves and our American rights - you need to take a minute please because we can lose them. We need to keep this world in balance and harmony with what’s morally right. Take a stand for what's right, even if you're terrified. The escape from your fears will be far much easier than what's to come.

We all have a story and different traumas - some in more severity than others. I know I’ve gotten abused in more ways than I can count. I was born with a physical deformity, my step-father did terrible physical and sexual things to me starting at a young age, and my mother abandoned me altogether. I could go on, but I'll spare you the details... I thought about suicide for years, and I hated myself internally, though I showed others a more confident side.

For years I blamed God. I engaged in secretive, emotional self-harm, and I acted out, but I stayed passionate in my career ambitions. I never stopped working and going to school, and I've never quit pursuing my rights for #equality.

I may have failed standing up for my rights as a child, but that all changed when I became an adult. I've filed several cases against employers and every time I was asked 'what financial incentive I wanted' when all I was seeking was EQUALITY. We are all worthy of that and more. Sadly, I see that it’s starting to slowly diminish in today's society.

A few days ago I heard Taylor’s Swift new song, and now it’s stuck on loop in my head LOL. That’s where energy comes in. You may not realize that what you listen to does, in fact, affect you. And with that said my friends, you can, and you will feel the energy coming from it. I felt genuineness from Taylor's song, and I’m grateful she took a stand for all of us. I hope you'll continue to do the same, if not make the change.

Monday, March 27, 2017

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. ❤

Tuesday, September 20, 2016

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


https://themighty.com/2016/09/dating-with-a-craniofacial-disorder-what-to-know/
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.

https://themighty.com/2016/09/dating-with-a-craniofacial-disorder-what-to-know/
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.

Join our online community to find upcoming Craniofacial Events and Gatherings nearest you
 

Thursday, August 11, 2016

Craniofacial Events Connection- Online Schedule of upcoming events within the United States


https://www.facebook.com/groups/CraniofacialEventsConnection/


Virtual schedule of upcoming events for individuals and families of Craniofacial Differences throughout the United States.


CRANIOFACIAL INVOLVEMENT: If you or a family member has a craniofacial abnormality and if you would like to take part in upcoming events involving craniofacial differences, please come join our new group that is exclusively for events all throughout the U.S. There are a variety of annual children camp events, picnics, family events, support groups, you name it! 

The experience of meeting others with craniofacial differences is a remarkable one, but even more so - the building of close relationships is without a doubt - a precious life treasure. Please come stand with us.


To find an upcoming event nearest you please 
https://www.facebook.com/groups/170897816665027/