julie beth
I was born on April 15, 1969, the third of four children in the Clarke family. After my
birth, Mom wondered why the delivery room became so quiet. No conversation was
occurring between the doctor and nurses. Finally, the obstetrician told Mom there was
a problem. When she saw me, the extensive port wine stain on my head, face, neck,
right shoulder, arm and hand was shocking. The doctor said a pediatrician should be
consulted to learn more about my condition.
When I was six weeks old Mom took me for my first check-up with the pediatrician.
He examined me but was unable to tell her anything about my condition. He noticed my
enlarged left eye and referred us to an ophthalmologist. That doctor knew immediately
that I had congenital glaucoma and advised monitoring the ocular pressure frequently,
saying I might need surgery if it got worse. During my second visit to the pediatrician we
finally learned that my diagnosis was Sturge-Weber syndrome as a result of his research
in medical textbooks. He told us that I might also have seizures in addition to the other
problems.
Fortunately my progress was normal for the first seven months of my life. I
was thriving and achieving all the developmental milestones. Monitoring the ocular
pressure in my left eye happened periodically but in November the ophthalmologist
recommended surgery to relieve the pressure. Then the bottom fell out! I experienced
my first grand mal seizure in the hospital the morning I was scheduled for surgery, so it
was postponed. I lost my ability to roll over, sit up, and had a left sided paralysis called
hemiplegia. The hospital physical therapist taught Mom some exercises to do on my
left side to prevent atrophy of my muscles. It worked! Eleven months later I regained
most of my strength and walked independently at 18 months, but I’m still coping with
some hemiparesis. Seizures continued with considerable frequency so my neurologist
prescribed a combination of phenobarbital and dilantin. At eight months I was declared
ready to undergo a surgical procedure called Goniotomy for glaucoma in my left eye.
It was considered successful for about five years. Then at age six the doctor decided a
second procedure called Trabeculectomy was needed. It, too, was successful. During
my late teens I developed “sympathetic” glaucoma in my right eye but I’m happy to say
that my glaucoma has been well controlled with three prescription eye drops for 15
years.
My seizures have been sporadic. For a seven year period, between ages three
and ten, I was seizure free. Then they reoccurred when I was a teenager with different
manifestations: tonic clonic, partial, and Jacksonian March. Several anti-convulsant
medications were prescribed over the years, but seizure control has been difficult. In
2009 my current neurologist recommended a Vagus Nerve Stimulator (VNS) implant.
Mom did some research, including contacting other SWF parents, before deciding to go
for it. On May 6, 2009, the implant surgery was performed and now I can honestly say
the VNS is helping to prevent and reduce my seizures.
SWS has been an impediment to completing my education and having a socially
and emotionally rewarding life. I am very grateful for the love and support of my family,
the services of dedicated staff at my residence and dayhab, and the SWF for being
there, helping me to realize that I’m not alone.
Thoughtfully written by Julie and her mom. Janet
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“SWS has been an impediment to
completing my education and having a
socially and emotionally rewarding life.”
The Sturge-Weber Foundation