Quasar44
Diamond Member
- Thread starter
- #141
Very sad newsSturge Weber Syndrome is a genetic but non-hereditary neurological birth defect. Iāve had it since I was born in 1974. I was fully diagnosed at age 4 in 1978 when I had a trio of seizures and a cat scan identified the calcium deposits in my brain.
I was on Phenobarbital from 1978-1985, when my parents decided to try removing me from the medicine since I hadnāt had another seizure and the medication was stunting my growth pattern.
I never had another recognized seizure until October of 2013 (39 years old). I was put back on medication and will be on it for life. I had another major incident in February of 2020 that caused my migraines to finally be diagnosed and my medication increased. Weāve been good since then.
The initial limits on my activities started in 2013 and the full ban on most of my activities occurred in 2020 (45 years old).