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Joined: Apr 2008 Gender: Female  Posts: 104 Location: Marion County, FL Karma: -2 |  | [P] Life of Sturgeweber Syndrome (Seizures) « Thread Started on Oct 23, 2009, 4:17am » | |
Life of Sturgeweber Syndrome (Seizures) Patient By Lori Triggs Copyrighted 15, 2009 True Story Of I And Other Sturgeweber Syndrome Patients
I am the only one that walks besides talks with the highest IQ out of over 6,000 people the two others are a the oldest woman she can walk, but she mentally retarded in her 50's, the oldest man can walk, but is mentally retarded and has a child with Sturgeweber Syndrome plus he has the highest IQ for a guy, but I beat his IQ so I smarter than him.
Every Sturgeweber Syndrome patients has a port drink birthmark on their face or neck or face and neck like I not a fire burn or been out in the sun too long, the only way to get it covered up is specialized make up costs couple $300 to 400 dollars or get laser surgery many time 1,500 dollars each time years worth.
Sturgeweber Syndrome patients are bed ridden or in wheelchairs besides using walkers most are retarded or cannot speak at all they are incoherent, they are vegetables staring at anything even blind.
Sturgeweber Syndrome patient has grand-mal seizures sometimes gets petite-Mal's seizures with medications sustained can only controlled by VNS stimulator pacemaker to the brain maintains the rest, well taking vitamin C to maintain immunities from illnesses.
Medications can cost from $10 to $100's of dollars of a month Keppra $400 dollars a month for a bottle, Zonegran $80's of dollars a month for a bottle Vimpat $300 a month for a bottle, Phenobarbital $10 dollars a bottle I get two bottles 64.8 and 16.2 now can you count.
If you do not want the Sturgeweber Syndrome there is a brain operation at a price take out all the damaged area be in a wheelchair as a vegetable the rest of your life or bedridden with no seizures.
I not another static join Sturgeweber Syndrome Foundation to be a member or be a spoke person I have been asked, I told them no same with Epilepsy Foundation I told them to stick it where the sun do not shine he was the founder of the Epilepsy Foundation Of NJ, I am me only me not somebody's money maker.
Sturgeweber Syndrome patients are not to be bullied as targets because the way we look or act with seizures, even our disability in walkers plus in wheelchairs bullies keep on walking keeping mouth shut, while hands down to the side.
Bullies you know who you are!
Sturgeweber Syndrome Foundation Website
http://www.sturge-weber.org/
If you want info on Sturgeweber Syndrome (Seizures)
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