Friday, January 24, 2014

MOEBIUS SYNDROME IN THE NEWS TODAY...

...and it should be, today of all days, as today is Moebius Syndrome Awareness Day.  We pick January 24th because that is the day that the doctor who helped discover and give a name to Moebius Syndrome, Paul Julius Moebius, was born.  And so many of us are out there raising awareness today.  Take a look for example at Moebius hero Lisa Bracamonte of southern California, and at all her doings:

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Brawley resident Lisa Bracamonte was born with a rare neurological disorder that causes facial paralysis.
Bracamonte has lived with Moebius syndrome for 39 years and, although it has affected her life, she does not let it bring her down.
“When I was growing up, it used to be really hard for me,” she said. “People would always stare at me.”
Now that Bracamonte is older, she has learned that appearances don’t make up who a person is.
“My friend would always tell me, ‘Lisa, it doesn’t matter how you look, people will accept you the way you are.’”
Today is Moebius Syndrome Awareness Day, a day dedicated to bringing awareness of the condition and educating people about it. Moebius syndrome is defined as partial or complete paralysis of the sixth and seventh cranial nerves, often resulting in the inability to show facial expression such as smiling and even blinking, according to a Moebius Syndrome Foundation brochure.
Additional conditions could include respiratory problems, speech and swallowing difficulties, dental problems, club feet, visual or hearing impairments and more, the brochure stated. Not all symptoms are present in every person who has Moebius syndrome.
For example, Bracamonte said she occasionally has difficulty swallowing her food and has even started choking while eating.
“People have way worse cases than me,” she said. Having seen advanced progression of Moebius syndrome at conferences throughout the country, she described herself as “having a touch of Moebius syndrome.”
The cause remains unknown, and because the condition is so rare, it is difficult to diagnose. Some people are undiagnosed for quite some time.
The conferences, which take place every two years, allow Bracamonte to learn more and more about the disorder and her own limitations. Through a surgical specialist and therapist, she said she learned that she has a muscle on the right side of her face, but it is paralyzed.
It’s possible for people with Moebius syndrome to have a paralyzed muscle or no muscle at all in their faces. With daily therapy exercises, Bracamonte is hopeful she can one day use that muscle to smile.
Exercises to strengthen that muscle include drinking out of a straw at the midline of her mouth and chewing gum or taffy on her paralyzed side.
“I feel the muscle move when I chew taffy,” she said. “I feel very happy (when it moves) because I know that it’s working.”
Treatment for the condition varies depending on the symptoms. Sometimes surgery can help, other times all that can be done are physical and speech therapies.
There are daily challenges Bracamonte faces because of Moebius syndrome. When she sleeps, she cannot fully close her eyes so they end up really dry, especially in the mornings. Running quickly can also be problematic because of those paralyzed muscles.
Despite the struggles, Bracamonte said, “Nothing stops me.”
She has completed her associate’s degree at Imperial Valley College, is working at a day care center as part of Imperial County’s Office of Education’s Early Head Start program and her ultimate goal is to be the director of a day care center.
“I love working with children,” she said. “They make you laugh, they make you smile and they brighten your day.”
Aside from her work, Bracamonte is very involved at St. Margaret Mary Catholic Church in Brawley and other organizations.
“I’ve been through obstacles because I have this, but I don’t give up because I have a lot of faith in God,” she said.
To other people who have Moebius syndrome, her advice is to never give up.
“I believe no one should give up. Always give it your best shot,” she said.

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Amen, Lisa.  Good for you!

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