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Feb 18, 2016

A Popular Light Technician Needs Your Help to Fight Rare Brain Disease

Dorian August

Thirty-nine-year-old Dorian August; he’s the light technician at the Bliss Center for the Performing Arts and has been working with the Institute for the past twenty-two years. But tonight, he is asking for your help. August was diagnosed some time ago with Arnold-Chiari; it’s a condition that is usually caused by structural defects in the brain and spinal cord. Since September of last year, August has been experiencing constant dizziness, muscle weakness, numbness, and vision problems. He told News Five today that his condition is deteriorating.

 

Dorian August, Needs Assistance

“The brain is growing—it’s not swell or anything, it’s just growing—but my skull is completely closed and it does not have the space to hold the capacity of my brain. And it tends to twist or rotates and it is pushing down on my nervous organs and it is twisting the C-1 disc at the neck and it is twisting the conduit that’s sending the fluid from up your spine to your head. And what’s happening is that the fluid is going up but it is not coming down back; it is settling on top of my brains.”

 

Duane Moody

“What’s the effect of this on your well-being? I understand that you’ve been having blackouts; that at some point you’re even shaking.”

 

Dorian August

“Some of the symptoms is headaches….it starts with severe headaches. You got muscle cramps, from your shoulders down to your shoulder blades. It’s affecting certain organs that you breathe with…your trachea and sometimes it cuts off the oxygen that goes to your brains and that leads to the blackouts. It often times starts with a choking or a cough and then I cannot breathe and I black out. Sometimes it triggers sneezing and I am left dizzy, seeing multiple people and things like that.”

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1 Response for “A Popular Light Technician Needs Your Help to Fight Rare Brain Disease”

  1. Timber says:

    Hi Sir. I wish I could help but it’s not my area . I will provide a few references for you. I’m assuming that you have Type I Chiari Malformation since your symptoms have manifested themselves. The disease showed itself just as research determined, in your third decade of life; you’re thirty seven years old. From a Genetics standpoint, this is a hereditary disease , almost always classified as “autosomal dominant”, so it’s most likely that one of your siblings, parent or offsprings have/had the disease, but the symptoms aren’t showing as yet. I suggest you get them checked out, The flow of the cerebrospinal fluid, which protects the brain and the part of the spinal column which starts right where you in Belize call “Cubby Hole” is restricted. Others who sometimes have the disorder are Hydrocephalics, you call them “Water Head” in Belize. You can try these organizations, March of Dimes in White Plains, NY (888-663-4637 0r 914-997-4488), American Syringomyelia & Chiari Alliance Project in Longview, Texas (903-236-7079 or 800-272-7282). Another Organization in Staten Island, NY, Chiari & Syringomyelia Foundation, (718-966-2593). There’s a neurosurgeon who I heard speak at a conference, in Atlanta , who performs these types of surgeries. His name is Dr. Jim Robinson. Tel (404-550-1335) . Also, contact the Ntl Institute of Neurological Disorders & Stroke (800) 411-1222. Most do the clinical trials but require two to three members of family because of the genetic inferences behind the disease. I hope that all goes well and may God be with you.

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