11-04-2004, 06:20 AM
Living with PWS and SWS is not an easy one. Especially when your parents are told “It’s just a birthmark.” Then they take you home without the knowledge that you have a syndrome do to the birthmark. I lived 32 years before I heard the words “Sturge-Weber Syndrome”.
I was born June 17, 1967. In Wilmington California, and weighted in at 8lb 8 oz. My PWS was noticed right after birth and I was taken to UCLA Medical Center were they spent 3 days giving me the once over. They found the stain covered my entire face, neck, chest, back ,left arm, left hand, some on my rear and left leg and foot. Let’s say close to 65 to 85% of my body. I was sent home on day three with my parents being told “It’s just a birthmark. We are unable to do lazier because it may kill her. She should be fine.” I was for awhile……….
I developed like most babies’s my age. I sat, crawled, and walk at the same time as all the baby books say is normal. Nothing gave my parents a clue that something more was behind the birthmark. I guess my first recollection of having headaches I was 5 or 6. They would come out of no where and hit like a freight train. But because of no mention of SWS it went undetected.
At this point, I was old enough to notice other people staring at me. At the time I thought my mom was just being down right awful to make ME answer there questions. But now looking back, it was the best thing she could have done. If she hadn’t made me speak for my self, I think I would be a whole different person. One I don’t think I would have liked. If she hadn’t gotten me to talk to people, I think I would be in a shell instead of getting out in this world. I found that the ones that had the courage to ask questions ended up being my friend. Adults, I find are the ones most ignorant. Instead of asking what it was, they made assumptions. One even told my mom, and I quote “How could you hit her like that!” I think the biggest memory that stands out is when I was 6 or 7 and in a store with my mom and a little girl my same age ask me what was wrong with my face. The next thing I saw was her mom haul off and smacked her! I was devastated for her. I was use to family members trying to hide me or cover the stain to go to church. Both my parents ran interference for me, from my grandmother who ran around with cover-up and powder. I think she may be the reason I don’t wear any make-up at all.
There wasn’t too many signs of SWS yet, I still seemed to be a girl with just a PWS. Aside of the headaches and getting ill every time we would go on a trip, things seem fine. No one ever noticed I was having Absent and Focal started to have drop attacks. My blood pressure would drop dangerously low for nseizures. They were so mild not even my parents were aware I was having them.
At the age of 10 my parents divorced and my mom moved me and my younger brother up the cost of California and eventually to Arizona. Then very strange things started to happen to me. The move to AZ intensified my headaches and my dizzy spells went from every now and then to every day, all day long. At 13 I started “That time of the month” and things really got out of hand. I thought I was really losing it. Things were happening and I had no answers for what was going on. The seizures were getting worse, but I had no idea that they were. I thought it was odd not being able to remember what had happen before someone caught me rocking or bobbing my head. I always thought they were all grand males and never thought I was having them. At 16 I started to get blood blebs on my face sounding my right eye. On one summer night I sat out side and let it bleed for over 45 minutes, because it broke open. I didn’t want to go to emergency room because I always felt like a lab rat when I did go. She came out side and saw all the blood and freak out. Then she tells me that UCLA doctors said if I grew these blebs to have them check out. Now she tells me. As a stubborn teenager I didn’t go. No more broke open so I saw no need to have it look at. I was a teenager with a life! I had things to do and places to be, always wanted to be seen. I love to be center of attention. I never did finish high school, struggled too much. I went all 12 years and 7 credits short and withdrew myself from school. Had learning disabilities and no one caught it.
Move out of the house at not quite 18, held a job at Dairy Queen and later a retail store, as a cashier. I got married for the first time at 21 and divorce 18 months later. Seems I missed the fine print on the license that read “cheating and beating is allowed” If that wasn’t enough, while trying to locate me after the divorce he wrote a death threat letter to me and signed it. He really meant till death do us part! Luckily thought out this time SWS lay dormant.
Knowing that I couldn’t live in the same town as him I moved to Tucson. At 22 now I was the life of the party at the local bar, had a job traveling with the retail store and I wasn’t having that may headaches. Mom decided that I needed to see the eye doctor again for a stigmatism. He said just torn tissue in my right eye that may need lazier. He said nothing about SWS. Then at 23 I decided I wanted kids and 6 months later I was pregnant. Everything went fine until about 5 months into the pregnancy, I started fainting for no reason. OBGYN sent me to dermatology; he confirmed I had a PWS but still no SWS. So I continued to have these strange attacks until I gave birth to my 9 lb 12 oz son. (Needless to say I had him c-section) His dad and I got married when he was 4 months old, and one his first birthday I found out I was 2 week pregnant with his brother. Three months into that pregnancy I had one of the oddest things happen. I had a stroke like seizure that took nearly over an hour to complete. It started with unsure footing and my joints would not move. By the time I got movement in my foot my hip was not working and when I could stand my left arm, elbow, and hand wouldn’t work. I started to freak out about the time I couldn’t talk. I remember telling my self I wasn’t crazy because I could still remember my name and where I live. I just couldn’t tell anyone and still trying it stay calm for my other son so he wouldn’t freak out. OBGYN now sends me to neurology and they do an MRI, they come back and say I must have had a blood vessel spasm in my brain and leave it at that. I STILL have no mention of SWS. Apparently the brain shrinkage I have is slight and they missed it and there was no calcuim deposits. So on the advice of OBGYN I had my tubes tied. After having the boys the drop attacks stopped and all I had were dizzy spells and headaches. I still had problems with low blood presser.
In 2000 at 32 years old and after complaining of something just not being right with my right eye for several years I made an appointment with a primary care doctor. In April of that year I was blow away! She walks into the room and the first thing out of her mouth is “Who’s your neurologist, for your Sturge-Weber Syndrome?” Which I said “What the hell is Sturge- what ever you said?” By the time I walked out of that room I was numb. I finally had some answers to some of the crazy things that had happened. First she sent me to an eye doctor and my worse fear happened, I had 2nd glaucoma in my right eye with NO chance in getting the sight back. Then he gave me the really bad news, it would in all likely happen to the left one too. To compound things, I was in the middle of divorcing the boys dad that seizure activity returned before I made it to my first neurology appointment. In the MRI this time they found the slight shrinkage on one side, but no calcium deposits. He said that the whole brain was infected and he was surprised that my seizures weren’t more profound. He said I was in a small 10% bracket that didn’t have grand males’ seizures with both sides being involved. So I live for a year just me and the boy thinking I could seize any time and die.
After feeling sorry for my self, I got back into my life. Most of my friends had kids and we would all pitch in and get a babysitter and hit the local bar. SWS had settled for a while and I was having fun sing in the bar and being in the lime light again. Then I met him, Levi. I was feeling really good one night at the bar and he got up and sang after me. I though I found Tim McGraw! We dated for a whole week and he ask me to move in with him. I said you haven’t even met my kids yet! Well he took us all out and by the weekend we all move in together. Two months later I had a drop attack while riding with Levi on the A.T.V, he had been asking me all day if I had felt alright because he said I wasn’t holding on like I normally did. I said I felt fine and we went on. Three hours later I passed out and almost fell off the bike. When I came to my head was resting on his thigh and hot enough to fry an egg on! I laid there for a bit and I didn’t want to be a wet blanket and wanted to continue to ride but he was scared I might have another while riding an took me home. Good thing to because I went strait into the shower (crawled, because I could barley walk) and slept for 3 days!
The last major one was on Dec 2001, this time it was the right side I couldn’t move my wrist or my hand. I was hyperventilating by the time we hit the hospital and Levi had to carry me in. So there I was about ready to pass out in the ER and NOBODY has a clue about SWS. I was so dehydrated that it rolled one of my veins in my arm while trying to put the IV in and so some hot shot nurse put it in my hand. (Which would have be alright but it was the one that was stiff) Then they send this 1st year intern in from nero, I think he ran to the computer and pulled up a quick version of SWS because he was convinced Levi had beat me and he didn’t think I had SWS! What a joke, I wish he was right! But he wasn’t. My last absent seizure was in Dec 03. Trileptal is working well now.
In 2004 I had my second lazier surgery on my right eye, 1st on my left. Pressures are now holding with one drop at night.
Last year they found arthritis in my hip cradle (both sides) and lower back near my tail bone. It also has narrowing and has a tilt to it.(lower lumbar and tail bone) I applied for SSI, I got turned down 3 times and had to go before a judge and he finally granted me disability rights.
Well there’s more blood bleb in sinus pockets, more on my face have appeared and it’s unclear what will be done if anything about that.
All my top teeth have cracked due to abnormal blood flow changing the tooth’s pulp and Novocain is useless.
Well now that I have scared every parent out there and myself too.
THERE IS LIVE WITH SWS! I am living proof! It’s not easy and some days even I think I can’t handle it but I have to, I have it.
The only advice I can give is try to keep home life normal, don’t treat them any different than other kids. Don’t hold them back from anything, if they want to try, back them. Believe in them! After all, we have surprise a lot of the medical community. Most doctors STILL say people with SWS wont live past 5 years old, ya right!
I was born June 17, 1967. In Wilmington California, and weighted in at 8lb 8 oz. My PWS was noticed right after birth and I was taken to UCLA Medical Center were they spent 3 days giving me the once over. They found the stain covered my entire face, neck, chest, back ,left arm, left hand, some on my rear and left leg and foot. Let’s say close to 65 to 85% of my body. I was sent home on day three with my parents being told “It’s just a birthmark. We are unable to do lazier because it may kill her. She should be fine.” I was for awhile……….
I developed like most babies’s my age. I sat, crawled, and walk at the same time as all the baby books say is normal. Nothing gave my parents a clue that something more was behind the birthmark. I guess my first recollection of having headaches I was 5 or 6. They would come out of no where and hit like a freight train. But because of no mention of SWS it went undetected.
At this point, I was old enough to notice other people staring at me. At the time I thought my mom was just being down right awful to make ME answer there questions. But now looking back, it was the best thing she could have done. If she hadn’t made me speak for my self, I think I would be a whole different person. One I don’t think I would have liked. If she hadn’t gotten me to talk to people, I think I would be in a shell instead of getting out in this world. I found that the ones that had the courage to ask questions ended up being my friend. Adults, I find are the ones most ignorant. Instead of asking what it was, they made assumptions. One even told my mom, and I quote “How could you hit her like that!” I think the biggest memory that stands out is when I was 6 or 7 and in a store with my mom and a little girl my same age ask me what was wrong with my face. The next thing I saw was her mom haul off and smacked her! I was devastated for her. I was use to family members trying to hide me or cover the stain to go to church. Both my parents ran interference for me, from my grandmother who ran around with cover-up and powder. I think she may be the reason I don’t wear any make-up at all.
There wasn’t too many signs of SWS yet, I still seemed to be a girl with just a PWS. Aside of the headaches and getting ill every time we would go on a trip, things seem fine. No one ever noticed I was having Absent and Focal started to have drop attacks. My blood pressure would drop dangerously low for nseizures. They were so mild not even my parents were aware I was having them.
At the age of 10 my parents divorced and my mom moved me and my younger brother up the cost of California and eventually to Arizona. Then very strange things started to happen to me. The move to AZ intensified my headaches and my dizzy spells went from every now and then to every day, all day long. At 13 I started “That time of the month” and things really got out of hand. I thought I was really losing it. Things were happening and I had no answers for what was going on. The seizures were getting worse, but I had no idea that they were. I thought it was odd not being able to remember what had happen before someone caught me rocking or bobbing my head. I always thought they were all grand males and never thought I was having them. At 16 I started to get blood blebs on my face sounding my right eye. On one summer night I sat out side and let it bleed for over 45 minutes, because it broke open. I didn’t want to go to emergency room because I always felt like a lab rat when I did go. She came out side and saw all the blood and freak out. Then she tells me that UCLA doctors said if I grew these blebs to have them check out. Now she tells me. As a stubborn teenager I didn’t go. No more broke open so I saw no need to have it look at. I was a teenager with a life! I had things to do and places to be, always wanted to be seen. I love to be center of attention. I never did finish high school, struggled too much. I went all 12 years and 7 credits short and withdrew myself from school. Had learning disabilities and no one caught it.
Move out of the house at not quite 18, held a job at Dairy Queen and later a retail store, as a cashier. I got married for the first time at 21 and divorce 18 months later. Seems I missed the fine print on the license that read “cheating and beating is allowed” If that wasn’t enough, while trying to locate me after the divorce he wrote a death threat letter to me and signed it. He really meant till death do us part! Luckily thought out this time SWS lay dormant.
Knowing that I couldn’t live in the same town as him I moved to Tucson. At 22 now I was the life of the party at the local bar, had a job traveling with the retail store and I wasn’t having that may headaches. Mom decided that I needed to see the eye doctor again for a stigmatism. He said just torn tissue in my right eye that may need lazier. He said nothing about SWS. Then at 23 I decided I wanted kids and 6 months later I was pregnant. Everything went fine until about 5 months into the pregnancy, I started fainting for no reason. OBGYN sent me to dermatology; he confirmed I had a PWS but still no SWS. So I continued to have these strange attacks until I gave birth to my 9 lb 12 oz son. (Needless to say I had him c-section) His dad and I got married when he was 4 months old, and one his first birthday I found out I was 2 week pregnant with his brother. Three months into that pregnancy I had one of the oddest things happen. I had a stroke like seizure that took nearly over an hour to complete. It started with unsure footing and my joints would not move. By the time I got movement in my foot my hip was not working and when I could stand my left arm, elbow, and hand wouldn’t work. I started to freak out about the time I couldn’t talk. I remember telling my self I wasn’t crazy because I could still remember my name and where I live. I just couldn’t tell anyone and still trying it stay calm for my other son so he wouldn’t freak out. OBGYN now sends me to neurology and they do an MRI, they come back and say I must have had a blood vessel spasm in my brain and leave it at that. I STILL have no mention of SWS. Apparently the brain shrinkage I have is slight and they missed it and there was no calcuim deposits. So on the advice of OBGYN I had my tubes tied. After having the boys the drop attacks stopped and all I had were dizzy spells and headaches. I still had problems with low blood presser.
In 2000 at 32 years old and after complaining of something just not being right with my right eye for several years I made an appointment with a primary care doctor. In April of that year I was blow away! She walks into the room and the first thing out of her mouth is “Who’s your neurologist, for your Sturge-Weber Syndrome?” Which I said “What the hell is Sturge- what ever you said?” By the time I walked out of that room I was numb. I finally had some answers to some of the crazy things that had happened. First she sent me to an eye doctor and my worse fear happened, I had 2nd glaucoma in my right eye with NO chance in getting the sight back. Then he gave me the really bad news, it would in all likely happen to the left one too. To compound things, I was in the middle of divorcing the boys dad that seizure activity returned before I made it to my first neurology appointment. In the MRI this time they found the slight shrinkage on one side, but no calcium deposits. He said that the whole brain was infected and he was surprised that my seizures weren’t more profound. He said I was in a small 10% bracket that didn’t have grand males’ seizures with both sides being involved. So I live for a year just me and the boy thinking I could seize any time and die.
After feeling sorry for my self, I got back into my life. Most of my friends had kids and we would all pitch in and get a babysitter and hit the local bar. SWS had settled for a while and I was having fun sing in the bar and being in the lime light again. Then I met him, Levi. I was feeling really good one night at the bar and he got up and sang after me. I though I found Tim McGraw! We dated for a whole week and he ask me to move in with him. I said you haven’t even met my kids yet! Well he took us all out and by the weekend we all move in together. Two months later I had a drop attack while riding with Levi on the A.T.V, he had been asking me all day if I had felt alright because he said I wasn’t holding on like I normally did. I said I felt fine and we went on. Three hours later I passed out and almost fell off the bike. When I came to my head was resting on his thigh and hot enough to fry an egg on! I laid there for a bit and I didn’t want to be a wet blanket and wanted to continue to ride but he was scared I might have another while riding an took me home. Good thing to because I went strait into the shower (crawled, because I could barley walk) and slept for 3 days!
The last major one was on Dec 2001, this time it was the right side I couldn’t move my wrist or my hand. I was hyperventilating by the time we hit the hospital and Levi had to carry me in. So there I was about ready to pass out in the ER and NOBODY has a clue about SWS. I was so dehydrated that it rolled one of my veins in my arm while trying to put the IV in and so some hot shot nurse put it in my hand. (Which would have be alright but it was the one that was stiff) Then they send this 1st year intern in from nero, I think he ran to the computer and pulled up a quick version of SWS because he was convinced Levi had beat me and he didn’t think I had SWS! What a joke, I wish he was right! But he wasn’t. My last absent seizure was in Dec 03. Trileptal is working well now.
In 2004 I had my second lazier surgery on my right eye, 1st on my left. Pressures are now holding with one drop at night.
Last year they found arthritis in my hip cradle (both sides) and lower back near my tail bone. It also has narrowing and has a tilt to it.(lower lumbar and tail bone) I applied for SSI, I got turned down 3 times and had to go before a judge and he finally granted me disability rights.
Well there’s more blood bleb in sinus pockets, more on my face have appeared and it’s unclear what will be done if anything about that.
All my top teeth have cracked due to abnormal blood flow changing the tooth’s pulp and Novocain is useless.
Well now that I have scared every parent out there and myself too.
THERE IS LIVE WITH SWS! I am living proof! It’s not easy and some days even I think I can’t handle it but I have to, I have it.
The only advice I can give is try to keep home life normal, don’t treat them any different than other kids. Don’t hold them back from anything, if they want to try, back them. Believe in them! After all, we have surprise a lot of the medical community. Most doctors STILL say people with SWS wont live past 5 years old, ya right!