I have to be health-conscious because of my current medical issues attributed to my craniofacial disorder. However, I still love my sweets. This #vegan eggnog recipe contains raw Cashews, Dates, and Banana. It is delicious, nutritious and super easy to make! 😋 http://bit.ly/2lhXKpf
Cynthia is a Graduate Student and Craniofacial Awareness Advocate born with Treacher Collins Syndrome. She currently works as a health and wellness activist with her husband through their FREE charity app Assuaged. The Murphys are passionately seeking to bridge the gap between healthcare and self-care to meet the needs of healthy living as a method for longevity. They are going beyond charity and unifying people through love and compassion.
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
Thursday, December 28, 2017
Craniofacial Conditions: Apply to Win a Cochlear Baha Advanced Hearing Aid Processor
Vegan Eating Set to Be 2018’s ‘Mega-Trend’ as Plant-Based Sales Triple in One Year
Plant-based #veganism is the new #health food trend of 2018! This is so exciting! :100: http://bit.ly/2BMJGdN
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
Wednesday, December 27, 2017
Raising Awareness for Facial Differences One Smile at a Time
Friday, December 22, 2017
The Multiple Benefits and Uses of Yarrow
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.’
Monday, December 18, 2017
Singapore Street Noodles Recipe—Nutritious Healthy Comfort Food
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
Wednesday, December 13, 2017
A Plant-Based Lifestyle with No Judgment, No Remorse
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
Tuesday, December 12, 2017
The Link Between the Rising Costs of Human Health Care and Pet Health Care
Consider a plant-based diet to help reverse disease today!
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
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! 💖
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!
Wednesday, December 6, 2017
Dr. Francis Smith, Treacher Collins Syndrome
Francis was born with Treacher Collins Syndrome and works as a scientist. He is also an accomplished classical pianist and violinist. We've spent quality time together at every retreat. He's like the brother I never had.
Francis you are a remarkable man. I'm so grateful to have you in my life! We can't wait until our next adventure at the CCA retreat! The girls and I are already talking and planning!
http://cbsloc.al/2Au8Xf0
Monday, December 4, 2017
Cassidy and Sophie, Treacher Collins Syndrome
Cassidy and Sophie treat each other more like sisters, despite having only met recently. The two girls were born with Treacher Collins Syndrome, a rare genetic disorder that results in facial abnormalities of varying degrees. http://bit.ly/2A0Rhsa
Saturday, December 2, 2017
Chocolate Chunk Maple Glazed Pumpkin Loaf Recipe
This Chocolate Chunk Maple Glazed Pumpkin Loaf recipe is delicious and easy to make! Browse more healthy #recipes on our FREE Assuaged iOS App!
Enjoy conveniently linking within the app and discover dual-certified USDA Organic and Non-GMO Project Verified products to buy in BULK and SINGLE for CHEAP!
Find plant-based recipes for #health conditions, body essentials products, DIY #beauty, mapquest to stores and MORE! https://itunes.apple.com/us/app/assuaged/id1300506711?mt=8
Adapt to an #organic #vegan blue-zone lifestyle for #wellness and #vitality today!
Friday, December 1, 2017
Zoey Tidwell, Battles Complications from Rare Craniofacial Condition
Adorable Zoey Tidwell from Saucier in Mississippi, USA, battles many complications caused by severely undergrown facial bones, including difficulties breathing and feeding. Zoey has an ultra-rare #craniofacial syndrome. She starts her marathon surgery list to fix her face and help her to lead a normal life. http://bit.ly/2khXs4k
Wednesday, November 29, 2017
Lucy's Story: Treacher Collins Syndrome
Lucy has never allowed her #craniofacial condition to hold her back. “It has made me more determined. It is my way of proving that I may look unusual, but that isn’t going to get in my way. I get on with what I want to do.” Next summer, Lucy will graduate in management and marketing and, after a year’s placement at Disney’s London office, she is excited about beginning her career.
http://bit.ly/2j1DHuc
Tuesday, November 28, 2017
Anni, Treacher Collins Syndrome - Choose to Be Kind
Anniston (Anni) was born to parents Derek and Beth Sanders, and was diagnosed with Treacher Collins Syndrome. She has undergone eight surgeries, most recently being a jaw distraction surgery, which was the most invasive and difficult surgery yet.
Anni was born with a small, recessed jaw, which makes it difficult for her to eat certain foods. Having a recessed jaw also resulted in Anni having severe sleep apnea and put her at risk for choking easily. The surgery involved placing two distractors, which are like metal rods, on each side of her jaw. http://bit.ly/2AfNx35
“Teach your children and grandchildren that everyone is different, and that it’s OK to be different,” Beth Sanders said. “When given the choice between being right and being kind, choose kind.”
Follow Anni’s journey on her Facebook page “Anniston Claire’s Journey.”
Scott Guzzo Has Crane-Heise Syndrome, a Rare Craniofacial Condition
I've spent time with the Guzzo family at the Annual CCA Retreat! Scottie has Crane-Heise syndrome, a #craniofacial condition. The syndrome is so rare, as far as the family knows, Scott may be the only person in the world right now with it. Scottie lives every day to the fullest, and he loves everyone. His energy is remarkable and enjoyably infectious.
The Guzzo's are amazing people who continue to make a profound difference in the craniofacial community and beyond. I'm so thankful to have met this amazing family. 💗 http://bit.ly/2AEXBpf
Monday, November 27, 2017
Local 21-year-old relates to movie 'Wonder'.
Aguilar has #Goldenhar syndrome, a congenital #craniofacial condition that affects development of his face. In most cases, as in Aguilar’s, only one side of the face is affected. His most recent surgery was in March of this year. He received prosthetic jaw joints. Aguilar, 21, graduated from Thurston High School and now has his driver’s license. http://bit.ly/2AfuN3A
Muskegon Girl with Pfeiffer Syndrome Is Making a Difference
Nine-year-old Avery Cooper was born with Pfeiffer Syndrome, an #craniofacial condition that makes her look different than other kids, "At first people would ask me why my eyes look bigger and I said because my face it kind of like flat in the middle. And they didn't really say anything they just wanted to know why."
Avery has had nearly 18 surgeries. Part of her attempt at being normal is to remove the stigma of #Pfeiffer Syndrome. http://on.ksdk.com/2AA6wbn
Sunday, November 26, 2017
Kids with craniofacial conditions hope film 'Wonder' will nurture awareness in others
Yates, of East Garfield Park, was born with a particularly severe case of Treacher Collins Syndrome, a #craniofacial disorder, which rendered him unable to open his mouth more than a sliver until two rounds of intense surgery in the last year at Rush University Medical Center. Since then, the Young Magnet High School senior has eaten food for the first time after subsisting on the meal replacement drink Ensure for much of his life. He is able to breathe better and is learning to speak more clearly.
http://www.chicagotribune.com/news/local/ct-met-wonder-facial-conditions-20171115-story.html
Saturday, November 25, 2017
Dear Special-Needs Parents: We're Being Duped by a Faulty Healthcare System
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.
Cynthia Today at Optimal Health | The Murphys Happily Married 11+ Yrs | Thane, USMC 2004
Thursday, November 23, 2017
Apply for Craniofacial Cochlear Baha Giveaway
Wednesday, November 22, 2017
Meet Nathaniel, a brave boy with Treacher Collins Syndrome
A remarkable story of hardships and triumphs! After nearly 60 surgeries, the Newmans met with surgeons at Seattle Children's Hospital and made the difficult decision to have their son Nathaniel undergo a radical surgery that had only been performed on one other child with Treacher Collins Syndrome. He was 12 years old, and the goal of the surgery was to be able to open up Nathaniel’s airway enough to finally remove his trach.
Over the years, the Newman family has worked with two non-profit organizations, myFace and Children's Craniofacial Association, both offer support to patients with facial differences and their families. as well as raise awareness about these conditions.
Watch Video and Read Full Story
Macy Does not Allow Goldenhar Syndrome to Control Her Life
Macy Acord has suffered from Goldenhar Syndrome since birth but she and her mom want people to know that she’s just like every other teenage girl. She does not allow her craniofacial disorder to control her life. http://bit.ly/2jfDZwV
Saturday, November 18, 2017
Healthy Plant-Based Vegan Multi-Vitamin
Garden of Life MyKind Brand |
Thursday, November 9, 2017
Kiri Schroeter has Undergone 40+ Craniofacial Surgeries
Kiri Schroeter prompted South Australians to come together and admire the work of leading #craniofacial surgeon David David.
Kiri's story is an amazing triumph over circumstances and possibly even tragedy. He was abandoned at a Cambodian orphanage as a nine-month-old and left in a shoebox without feet and hands, and with facial deformities, Kiri was adopted by a wonderful Barossa Valley family. Read full article HERE.
Friday, November 3, 2017
Dorsey Ross and Apert Syndrome
Dorsey Ross was born with a disorder called Apert Syndrome, a #craniofacial condition that affects the hands and face. When he was born his forehead was pushed outward his eyes and nose were pushed back into his head. His fingers and toes were fused together meaning Dorsey had no movement of them. He has been through 68 operations over his lifetime, told he would not make it in this world by doctors.
Dorsey Ross Is The Definition of Overcomer
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.
Friday, October 27, 2017
Farewell Gathering for World Renowned Craniofacial Surgeon Dr. Andrew Wexler
Wednesday, October 25, 2017
Parental Hardships associated with Craniosynostosis
An insightful article published via The Chicago Tribune about #craniosynostosis. This father tells his story and the emotional parental hardships associated with this #craniofacial condition. ❤
http://trib.in/2xnzHJy
My Craniofacial Blue Jay
My husband has dual talents, including photography. He took this amazing picture of a #craniofacial blue jay who visits me often.
Something happened to her beak... I'm not sure if this beautiful bird is male or female, but we can relate in more ways than one.
Saturday, October 21, 2017
Lucas born with Lymphangioma Survives Surgery
Man, 22, survives surgery to remove huge tumor from his face after a decade of fundraising Lucas McCulley, 22, from Idaho, was born with disease known as lymphangioma. It results in a rare, benign tumor in the neck or head which can obstruct breathing He underwent 24 surgeries before age 10, Read more: http://dailym.ai/2yHIrhp
Friday, October 20, 2017
Anxiety, Depression Greatest in Younger Kids with Craniofacial Birth Conditions
Anxiety, depression greatest in younger kids with facial birth disorders. Another worthy mention of the recent study conducted by #craniofacial specialist Dr. Justine Lee of UCLA https://goo.gl/EEFQop By Carolyn Crist (Reuters Health)
Thursday, October 19, 2017
True Beauty Comes From Authenticity - Not Perfection by Rasheera, Goldenhar Syndrome
Please read this AMAZING article written by Rasheera Dopson. I met her this last July at the Annual Children's Craniofacial Retreat, and we spent the majority of the time together - including a mini road trip to the zoo with Francis and Nicole!
Rasheera was born with #Goldenhar Syndrome and has overcome so many devastating obstacles in her life. This woman has a huge heart and soul, and she is beyond authentic. I love her perspective, and I'm so grateful to have her in my life!
She is currently launching a quilt and blanket drive for the Holiday with FACES National Craniofacial Association. The purpose of this drive is to provide warmth and convert to children who are currently in the hospital. They've had several different partners who've already donated over 20 hand-made quilts. This week their drive will be going live, so please support by making or sending in a blanket for children! ❤️
True Beauty Comes From Authenticity - Not Perfection https://goo.gl/uLdHZk #craniofacial
Wednesday, October 18, 2017
Jake Westbury Born with Treacher Collins Syndrome
After 21 years and 12 surgeries, Jake Westbury now has a face after being born with Treacher Collins Syndrome https://goo.gl/hiBnz9 | By Jane Hansen, The Daily Sunday Telegraph
Tuesday, October 17, 2017
Dr. Jeffrey Fearon Discusses Apert Syndrome
Dr. Jeffrey Fearon is a reputable Craniofacial surgeon and in this video he provides valuable insight and information about Apert Syndrome!
BIOGRAPHY: Dr. Jeffrey Fearon was born in the United States, grew up in London, England, and New Canaan, Connecticut. After graduating from the Mt. Hermon School in Massachusetts, he received his B.A. from Brown University. He pursued his post-baccalaureate studies at Columbia University in New York, and attended medical school at the University of Cincinnati. He completed a full six-year general surgery residency at the Deaconess/Harvard Fifth surgical service in Boston, and a plastic surgery residency at the Massachusetts General Hospital; both associated with Harvard Medical School. After a one-year fellowship with the Children’s Hospital of Philadelphia at the University of Pennsylvania, he joined the Dallas Craniofacial Center as a director. His practice is focused on the treatment of rare birth defects in children, who come to Dallas from all around the United States, as well as internationally. Dr. Fearon is actively engaged in #craniofacial research, has authored many scientific articles and book chapters, serves on the editorial board of Plastic and Reconstructive Surgery, and has received a U.S. patent for a bone distraction device used to treat unusual birth defects. Dr. Fearon is President Emeritus of both the American Society of Craniofacial Surgeons, and the Texas Society of Plastic Surgeons. He also has served on a number of community boards, is an amateur sculptor, enjoys helicopter skiing and is an avid surfer. He and his wife Regen are the proud parents of three wonderful children. #ApertSyndrome
https://youtu.be/Gn3kj6tG2RQ
Monday, October 16, 2017
Native American author born with Hydrocephalus talks race, poverty and reading
I love reading this! Native American Sherman Alexie entertained an audience of fans Sunday as he talked about growing up with #hydrocephalus, a #craniofacial condition where fluid builds up in the brain and swells the head. “It’s always important to see different places and the different faces and ideas that come with them. From where I’m from there would never be a talk like this.”
https://pittnews.com/article/123802/top-stories/native-american-author-talks-race-poverty-reading/