Katie born with Megalencephaly Craniofacial Disorder

Perfect for #Craniofacial Acceptance Month and so #inspiring to watch. What a beautiful family. ❤️Katie was diagnosed with megalencephaly at birth, a growth development disorder characterised by the overgrowth of the brain. https://youtu.be/SD-0icVfS1s #specialneeds #beauty

Craniofacial Resources for International Day of Charity

Below I've listed some link resources for craniofacial families in need of financial assistance.

Today is International Day of Charity, which promotes charitable efforts made to ease poverty worldwide. People are in need more than ever today, especially given all the recent earthly disasters.

I've met many families within the craniofacial community who do not have the income resources for medical bills let alone being able to attend gatherings. There are many resources out there to help you. For more information, please visit these websites. Please comment in this thread if you have any further questions or needs!

1. https://goo.gl/mVFovH - CleftLine

2. https://goo.gl/hgAFPZ - NeedyMeds

3. https://goo.gl/1b1fM8 - F.A.C.E.S

Updated List of 2017 Craniofacial Events

Happy Saturday & Craniofacial Acceptance Month!

I'm still working on my challenge video nomination. Also, the events page is currently being updated. If you're hosting or know of any upcoming craniofacial events - please let me know. I am happy to share any cranio related events. You should be able to post any events to the group yourself directly.

I've been dealing with some medical issues and working to launch our charitable project. But I'll always be dedicated to sharing these cranio events. Meeting others in your realm of experience is remarkable and life-changing. I hope this helps you connect. You can view the List of updated events at: Craniofacial Events and Connection<3 br="">

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.

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

 

PTSD Awareness Event Provides Support for U.S. Military Veterans and Children with Craniofacial Anomalies

THREE CHARITIES TEAM UP TO “FIGHT FOR ACCEPTANCE!”

PTSD Awareness Event Provides Support for U.S. Military Veterans and Children with Craniofacial Anomalies

San Jose, California: Northern California-based Wrestling for Charity (WFC) along with Southern California's Empire Wrestling Federation (EWF) are proud to present the “Fighting for Acceptance” professional wrestling charity event, 5 p.m., Sunday, Sept. 25, at the Broken Spoke Western Saloon, 370 Saratoga Ave, San Jose, CA. Doors open at 4:30 p.m. with a bell time of 5 p.m.

Tickets are $20 VIP ringside, $12 general admission, and $10 for Military and Senior admission. The event is open to the public, must be 21+ with a valid ID to enter The Broken Spoke featuring a full bar that includes one of the largest selections of brews, liquor, and bottle service, plus many non-alcoholic choices. Tickets may be purchased online at https://wfcwrestling.ticketleap.com/fighting-for-acceptance

This unique event celebrates Craniofacial Acceptance Month (September), which is a time for people with facial differences and craniofacial differences to celebrate their appearances and help widen the circle of acceptance for children and adults with facial differences. One of the primary event functions is raising awareness and funds for the Children's Craniofacial Association (CCA). UCLA’s Pediatric Craniofacial Program at Mattel Children’s Hospital (UCLA), AboutFace-USA, a military and veterans’ charity service organization empowering injured veterans and their families, are also beneficiaries and have joined forces with CCA in the Fight for Acceptance.

Craniofacial differences consist of physical birth defects resulting in abnormal structures and underdevelopment that affect the bones, muscles, and tissues of the face and skull. Approximately 20,000 children are born with a facial difference in the United States every year. In many cases, reconstructive surgeons can correct these problems early—often while the children are still infants. However, in some cases, facial reconstruction is not easy or even possible.

CCA, UCLA, and AboutFace-USA all deal with the realities of Post-Traumatic Stress Disorder, PTSD, a challenging and often debilitating mental health disorder that occurs in individuals who have endured traumatic experiences. PTSD often centers on the theme of the abuse (e.g. war and combat, childhood bullying victimization, physical abuse, frequent and invasive surgeries, etc.) with research showing that 7.5 percent of people experience PTSD.

PTSD-related suicide is the tenth leading cause of death in the United States. Approximately 20 military veterans suffering from PTSD commit suicide every day, nearly one every hour. This event will raise further awareness and opportunity for those with craniofacial anomalies, disabled military veterans, and those who battle PTSD.

About The Organizations:

Children's Craniofacial Association, a 501(c)(3) nonprofit organization founded in 1989, serves over 20,000 families per year. CCA's mission is empowering and giving hope to individuals and families affected by facial differences.

The Pediatric Craniofacial Program at Mattel Children's Hospital UCLA is committed to providing compassionate and expert quality care to children who have congenital and craniofacial anomalies. This program has achieved national and international recognition and currently functions as one of the largest programs of its kind in the United States.

AboutFace-USA serves as a community resource for veterans; providing access to services and resources that support recovery, rehabilitation, and community reintegration. It is dedicated to empowering veterans and their families.

Press Releases published via El-Observador, Dick Sparrer Mercury News, and Sal Pizarro Mercury News

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

 

Add to Anti-Banner

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

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