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Showing posts with label craniofacial. Show all posts
Showing posts with label craniofacial. 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



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Tuesday, February 27, 2018

The Psychological Impact of Children born with Craniofacial Abnormalities


I've been studying the psychology of our conditions and have written several research papers. This is taken from my paper "The Psychological Impact of Children born with Craniofacial Abnormalities."

Awhile back, I showed this paper to Dr. Lee, a reputable #craniofacial doctor at UCLA. She has a beautiful heart and she's always inspired me to share my knowledge with others.

My husband is studying for a Bachelor's in Nutrition, which we'll be educating others about as well. Our studies were graded by accredited educational institutions. If you have any requests, please let us know!



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Tuesday, February 13, 2018

Charitable Giveaways: Craniofacial Cochlear Baha Hearing Aids


Does anyone need a new Cochlear Baha hearing aid device? We have TWO advanced processors to GIVE to #craniofacial families in need. The deadline to apply is coming up soon. Please apply and submit your application here: https://goo.gl/1NNu8u



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Friday, January 12, 2018

Organic Vegan Alfredo Purple Pad Thai Recipe


Treacher Collins Syndrome is a #craniofacial disorder that typically presents many digestive issues. I have stomach pain and indigestion almost daily. For this reason, I must select healthier foods to eat. This organic #vegan Alfredo Purple Pad Thai #recipe is delicious, nutritious and so easy to make! http://bit.ly/2D0d2tP



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Thursday, January 11, 2018

A Walking, Talking Miracle: Living with Pfeiffer Syndrome



Braden is indeed a miracle! He's endured 28 surgeries and medical procedures related to his condition known as Pfeiffer syndrome, a #craniofacial disorder. He doesn’t eat by mouth, but relies on a feeding tube in his stomach. http://bit.ly/2mk4vGV





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Thursday, January 4, 2018

“Just a normal girl,” Anna overcomes great challenges



Anna was born with a rare #craniofacial condition called Nager syndrome. She has underdeveloped cheekbones, eight fingers, a cleft palate and small jaw.



 



To date she's had three surgeries on her jaw and other medical procedures to correct sleep apnea, eating difficulties, hearing, speech and hand functions. http://bit.ly/2AngNTS





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Friday, December 29, 2017

Forest Born With Charge Syndrome Has Spent His Entire Life in Hospitals. Now His Parents Need Help Bringing Him Home


One-year-old Forest Kanode has spent the entire first year of his life in a hospital. He had surgery at 7 days old and then he had a second heart surgery at 2 months old.

Forest’s heart problems were just part of what he’s dealt with. He was also diagnosed with CHARGE syndrome, a #craniofacial disorder that can affect a child’s eyes; heart; sinuses, esophagus and trachea; development; genitals and ears. http://bit.ly/2BRhoyG



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Thursday, December 28, 2017

Craniofacial Conditions: Apply to Win a Cochlear Baha Advanced Hearing Aid Processor



We've received many applications for the Cochlear Baha processor giveaway. Please apply if you or your child has a #craniofacial condition and are in need of an advanced hearing aid device. You can submit an entry following the link. 😊 http://bit.ly/2zcN5Bi





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Casting Call for Young Girls with Disabilities


Calling all #craniofacial parents! Check out this amazing modeling opportunity provided by Changing the Face of Beauty! http://bit.ly/2zFrKzH



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Wednesday, December 27, 2017

Raising Awareness for Facial Differences One Smile at a Time



Rebecca was born with hemifacial microsomia, a #craniofacial condition. Often, people assume that a facial difference includes a cognitive delay or a learning disability. Griffin notes that this assumption is simply not true. “Overcoming barriers like that is a significant part of our work,” she said. http://bit.ly/2BZuD4J





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Wednesday, December 20, 2017

Media News: The Love Story Behind Assuaged


The Assuaged​ owners Thane Murphy (Disabled USMC Veteran) and Cynthia Murphy (Treacher Collins Syndrome) have a unique 'rags-to-riches' love story that made its way across the media news!

Follow the link to watch the video by Barcroft Media! http://bit.ly/2Ba9zUC

Daily Mail Reports: Woman told she was too ugly to #love and spent her childhood being beaten and #bullied has finally accepted her severe facial deformity because to her husband she is ‘the most #beautiful woman in the world.’





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Monday, December 18, 2017

Looking Passed the Face to the Person Within


Jennifer Wallace reflects on her journey and the documentary she was inspired to create. Her first surgery at 22 months old and continued through more than 16 additional surgeries to correct facial damage caused by a #craniofacial #hemangioma, a benign growth of blood vessels. Story published by Wells Fargo Stories. http://bit.ly/2CvLxDx



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Wednesday, December 13, 2017

Couple With Rare Disorder Meet, Get Engaged


A beautiful love story that begins in 2013. Erin, from Linwood, has Moebius syndrome, a rare #craniofacial disorder that causes facial paralysis. According to the United States National Library of Medicine, the condition affects 1 in 50,000 to 1 in 500,000 newborns. http://bit.ly/2z7gqzr



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Saturday, December 9, 2017

Anthony was born with Craniosynostosis


Anthony was born with #craniosynostosis, a common #craniofacial disorder. His skull was fused together, preventing growth. But doctors noticed something amazing. http://bit.ly/2yRElms



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Craniofacial Doctor Andrew Wexler Retirement Gathering


The farewell gathering for Dr. Andrew Wexler was an amazing turnout. They even pulled my patient chart and had it out on the table. It was funny but so meaningful! ðŸ’–


Dr. Wexler has treated children with craniofacial disorders for over 35 years. He is famous for his silly bowties and genuinely caring for his patients. Those born with these conditions often undergo surgery as young as two years old. Surgery is a daunting and complex process, but he’s always ensured to bring humor just before going under the knife. He has changed many lives, including mine.

 

Not only has Dr. Wexler helped bring immense inner joy to many, but he’s given us the realization that surgeries are only surface level. Plastic surgery does not bring harmony to the heart or fix what's missing inside. He’s always advocated that fact. 


Many patients didn't show because of the wildfires in Los Angeles, but several of his colleagues attended, I lost count! I'm so thankful for Dr. Francis helping me to arrange the occasion. 

I met some incredible people on The Kaiser West LA #craniofacial team. These are amazing people who truly care to make a difference in our lives. Without their delicate care all these years, I wouldn't be here today. I'm forever grateful. 

Dr. Wexler thank you for making such a positive impact on my life! You will be deeply missed by all!



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Saturday, November 25, 2017

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

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. 💜
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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.



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.


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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

Legislation for Craniofacial Medical Insurance


Ann Quigley and mom Criss advocates for a bill that would provide insurance coverage for #craniofacial disorders in Massachusetts https://goo.gl/3vSGjj
“This legislation expands access to medically necessary treatments and alleviates the burden of exorbitantly high medical bills from those suffering from craniofacial disorders,” said Senator Cyr. “It’s about fairness. I appreciate Criss and Ann’s advocacy, and I remain optimistic that, through their work, the Legislature will be able to move forward on easing the financial burden on people who live with craniofacial disorders.” To write letters to the Joint Committee on Financial Services in support of the bill, please visit: https://malegislature.gov/Committees/Detail/J11/190



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Monday, October 2, 2017

Craniofacial Dental Plaque - Periodontal Disease


I'm on the way to the orthodontist then to Lisa's for a long overdue sleepover!

If you have a #craniofacial condition and suffer from severe gingivitis and periodontal disease, resulting in gross built-up plaque on your teeth, you're not alone. Before now, I had to pay money out-of-pocket to get thick yellow plaque removed every 2-3 months. 😫

This organic brushing rinse made by Essential Oxygen is AMAZING, it took most of my problems away, including gum recession.

Treat this just as mouthwash, swish for a few minutes, then brush! Use this rinse at least three times a day, until you notice the significant improvement. The key is to be as hygienic as possible so you won't lose any teeth. The results are incredible! ❤️

Here's a link where a 16oz can be purchased. https://www.iherb.com/pr/essential-oxygen-organic-brushing-rinse-peppermint-16-fl-oz-480-ml/28373

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