11-08-2004, 03:38 AM
(You can also find this story in the Adult Section of the Group)
Stats
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Name: Paul
Male
Age: 22
Location: Maryland, USA
Disabled Community College Student
SWS/PWS/KT
Chairperson for Teens/Adults with SWS Council
My name is Paul, and I have Port Wine Stain that covers 75 percent of my face and body. Have had 14 laser treatments since age 10. I have glaucoma in both eyes which is now controlled.
I have had 7 eye operations total. Was one of the first 13 glaucoma paitents to get the commonly used trebeculectomy to lower eye pressure. Today I suffer a reverse affect of glaucoma where eye pressure goes to zero instead of a continuous rise in pressure. This is known as a "hypotney episode" in which drops are taken to stabalize the eye pressure and return a temporary loss of sight.
My KT covers my entire right hand, fingers, and arm on that side and some inclusion of the right side of my back and chest area.
I do have seizures which are mostly controled at this point with 1400mg of Carbatrol a day. I do have breakthrough seizures on an average of every 3 or 4 months. Sometimes less depending on flu, allergies, lack of sleep, and increased stress.
I also have neurological deficets which have affected both sides of my brain but mostly to one side. I am not good at math, science, or doing fine motor tasks such as tying a shoes or buttoning a shirt. Siome gross motor tasks are difficult as well but not as much a problem. I excel in vocabulary, english, and speaking. I have a bad short term memory but long term is excellent. I hear to remember rather than read to remember, my brain just kind of re-wired itself at an early age.
I only take one or two college classes at a time because of the fatigue of medication and slow processing the my brain has. I'm currently talking review math for the 6th time.
Other problems I have are back problems, I have a 7 degree curviture of the spine.
I plan to be a writer, but it may be awhile till then so I'm attending school in a slow steady pace, and in the meantime helping others with SWS and bringing awareness to the world about it.
My parents are divorced since the age of 5 and my mother has been both my parents to me. She is a nurse and went back to college when I was 10 to obtain her degree for it. She has saved me multiple times from SWS related episodes. Might not be here today if not for her.
I have one older sister whois 27 and lives on the other side of the country in San Diego California.
These are just the basics to what else you can find out about me, but we all know the life of a SWS individual is a long and challenging one especially when it comes to dealing with society and their tainted view of SWS. If you have SWS and would like to talk to someone your age or have a young child and want to know what to expect, I'm here to give hope an explanations as well as listen to what you have to say. Feel free to contact me anytime.
-Paul
Stats
------
Name: Paul
Male
Age: 22
Location: Maryland, USA
Disabled Community College Student
SWS/PWS/KT
Chairperson for Teens/Adults with SWS Council
My name is Paul, and I have Port Wine Stain that covers 75 percent of my face and body. Have had 14 laser treatments since age 10. I have glaucoma in both eyes which is now controlled.
I have had 7 eye operations total. Was one of the first 13 glaucoma paitents to get the commonly used trebeculectomy to lower eye pressure. Today I suffer a reverse affect of glaucoma where eye pressure goes to zero instead of a continuous rise in pressure. This is known as a "hypotney episode" in which drops are taken to stabalize the eye pressure and return a temporary loss of sight.
My KT covers my entire right hand, fingers, and arm on that side and some inclusion of the right side of my back and chest area.
I do have seizures which are mostly controled at this point with 1400mg of Carbatrol a day. I do have breakthrough seizures on an average of every 3 or 4 months. Sometimes less depending on flu, allergies, lack of sleep, and increased stress.
I also have neurological deficets which have affected both sides of my brain but mostly to one side. I am not good at math, science, or doing fine motor tasks such as tying a shoes or buttoning a shirt. Siome gross motor tasks are difficult as well but not as much a problem. I excel in vocabulary, english, and speaking. I have a bad short term memory but long term is excellent. I hear to remember rather than read to remember, my brain just kind of re-wired itself at an early age.
I only take one or two college classes at a time because of the fatigue of medication and slow processing the my brain has. I'm currently talking review math for the 6th time.
Other problems I have are back problems, I have a 7 degree curviture of the spine.
I plan to be a writer, but it may be awhile till then so I'm attending school in a slow steady pace, and in the meantime helping others with SWS and bringing awareness to the world about it.
My parents are divorced since the age of 5 and my mother has been both my parents to me. She is a nurse and went back to college when I was 10 to obtain her degree for it. She has saved me multiple times from SWS related episodes. Might not be here today if not for her.
I have one older sister whois 27 and lives on the other side of the country in San Diego California.
These are just the basics to what else you can find out about me, but we all know the life of a SWS individual is a long and challenging one especially when it comes to dealing with society and their tainted view of SWS. If you have SWS and would like to talk to someone your age or have a young child and want to know what to expect, I'm here to give hope an explanations as well as listen to what you have to say. Feel free to contact me anytime.
-Paul