My Story (Paul)
Paul 35 / M / PWS / SWS / KT
Born with 75 percent port wine stain on both sides of my face and body. KT on my right hand and arm. I've had a DVT in my leg, I have glaucoma in both eyes and had my first of 7 eye surgeries at six months old. Six others would follow throughout the years but would ultimately lead to no more eye drops and solid eye pressures. Some of my vision was spared in the process but glasses won't ever help because of the way my brain was affected. I have balance issues and depth perception problems. I haave AVM's in my face and the base of my brain. I have an AFO brace because the AVM in my brain causes a foot drop like affect in my left foot and ankle.
I have seizures, mostly controled with 900mg Carbatrol 2 times a day. I average about six seizures a year. I have processing issues at time and challenges with math and simple things like tying my shoes and buttoning a shirt mainly due to poor fine motor skills. I am weak on one side of my body, i have scoliosis, vertigo, headaches and migaines. I am hypothyroid and have very low vitamin D. I also have high blood pressure since a young age.
I had a lower lip debulking at age 17 due to overgrowth of port wine stain in my lip.
I believe thats all I can think of at the moment, I'm quite the handful and most doctors are always in learning mode with me. I try to take it in stride and hope to create a difference for Sturge-Weber any way I can. Feel free to reach out to me.
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