On this day-after-Moebius Syndrome Awareness Day, it's good to remember that many famous folks throughout history have had physical differences. Take the great pianist Chopin, for example:
"Frédéric François Chopin may have died in 1849, but he's still picking up credits for music in movies, such as the rebooted "Karate Kid" and "The Curious Case of Benjamin Button." And, even more surprising, doctors are still trying to diagnose his condition. Chopin, who had bad health throughout his life, had some kind of pulmonary illness that led to his death at age 39, and whatever that was is still up for debate. Was it cystic fibrosis? Tuberculosis? The world may never know, but doctors and music enthusiasts are still guessing. Now, two Spanish researchers are tackling a different side of Chopin's health: The strange behavior and visions he reportedly saw on several occasions. They report in the journal Medical Humanities that Chopin may have had temporal lobe epilepsy, a condition that hadn't yet been described in medical literature during the composer's lifetime. Dr. John Hughlings Jackson is credited with advancing the understanding of epilepsy and epileptic seizures in the 1870s.
It's therefore practically impossible for Chopin's doctors to have suspected epilepsy, but the hallucinations seem to fit that diagnosis, said Dr. Manuel Vazquez Caruncho, radiologist at the Complexo Hospitalario Xeral-Calde in Lugo, Spain, and lead author of the study."
MOEBIUS SYNDROME IN THE NEWS
More heroes---this time from Colorado:
"Toddler Chloe DeLisa first heard hurtful words about her partially paralyzed face this winter at the Burger King play area in Firestone. “One little boy said, ‘Don’t play with her. She looks funny,’” said her mother, Shaundelle DeLisa, 39. She and her husband, James, also 39, dread these inevitable exchanges and decided to schedule “smile surgery” for Chloe when she turns 5. Chloe, 2, suffers from a rare neurological subcondition of Moebius syndrome that makes the left side of the little girl’s face expressionless.....besides the blindness in her left eye, Chloe is deaf in her left ear and suffers moderate hearing loss in her right ear. She also struggles with weakness in her left leg and arm.
“I remember the day we got the letter from the state certifying her as deaf and blind, and all I could think of was a Helen Keller situation,” Shaundelle DeLisa said. “She was quite young. I was scared to death.”
With hearing aids, Chloe hears within the normal range. And she learned to crawl and walk, even though doctors doubted she would. Her condition still makes communicating tough, though.
She can’t use her left hand very well to communicate with American Sign Language. Without lip control, she cannot form letters such as “P,” “B” or “M.” “So, she calls me ‘Nanny’ instead of ‘Mommy,’” Shaundelle DeLisa said.
But the DeLisas’ biggest concern relates to the psychosocial impacts of showing the world a flat face — at least on the left side. Online, they read about others with the condition who experience poor self-esteem and even self-hatred. James DeLisa said he and his wife blamed themselves in the early days. Then they blamed each other for not keeping Chloe from scratching at her blind eye, a habit that could cause the kind of infection that would lead to removing it. Now, they just promise their daughter — the third of their four daughters, ages 17 years to 4 months — and themselves that they will do everything possible to do right by her.
That includes scheduling the smile surgery while at the same time loving her “as is.”
“If I could take it all away from her, I absolutely would,” Shaundelle DeLisa said. “But I can’t. So, for her, it has to be OK. To let her think for even a second that it’s not OK would be devastating to her.”
You guys are all heroes. Best of luck to the DeLisas!!
"Contentment is a pearl of great price, and whoever procures it at
the expense of ten thousand desires makes a wise and a happy
purchase." -John Balguy
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