Sturge-Weber Syndrome

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    Community Voices

    Exercising Doesn't Mean I'm Not Disabled

    I fought for my disability payments for years, I had to retain a lawyer, pour my heart out in front of a judge and wait. When I was finally “rewarded,” their word not mine, my disability, I protected it like a Faberge egg. I watched over it, but at what cost? I was warned that the SSI fraud department were patrolling Facebook and Instagram accounts. I had friends remove videos of me going down a slide on a boat, because fun means you aren’t disabled. I missed out on activities, refused to be in photos or check in, all because “they” were watching. What does any of this have to do with dumbbells? Since receiving my disability I joined a gym, a Crossfit and boot camp gym. This gym is family-focused, so after every group class we take a family photo, one that until now I have refused to be in. My gym family has taught me so much about myself, especially about facing my fears, that I want to share a photo. Boot camp has taught me how much mental and physical strength, follow through and self-confidence I actually have. That if I need to fight for my benefits again, I will. It was a slow process, but it has been so worth it. My disabilities make my workouts a bit different than the rest of the groups, but no one pays attention or even notices. I’m able to take breaks as needed, rest and even skip exercises when my back or leg is killing me. If lifting 10 to 20 pounds on a 15-pound bar offends the “watchers” that much, oh well. Pushing myself for 30 minutes two or three times a week doesn’t mean I am not disabled. I sat in an office chair for 45 minutes and it was very painful. Doing dishes or folding laundry is enough to send me to bed. The disabled community needs to feel safe to take care of themselves. Going to the gym and working out has so many benefits, including pain management, socializing and building self-esteem. All of which are critical in our lives. I have nothing to hide!

    Community Voices

    Life really sucks when despite your best efforts 2 b positive and combat the downside challenges, life proceeds forwards with it’s downward spiraling course !infact it can b downright awful when especially the ones who r supposed to love u the most don’t have a clue as to what u deal with daily.And even though u try to convey your deepest and
    Innermost thoughts 2 them,it’s 2 no avail that you do so ;as it all goes right over their heads.It’s a road traveled almost alone.God gives u the strength to carry on with strength beyond what is normal but u still have a very heavy load to carry when you have a genetic disorder called mitochondrial myopathy and Lyme disease with fibromyalgia added to the mix and Asthma and having suffered at the hands of surgeons more than ten times....need I say more? Difficult does not even closely or remotely describe this living nightmare called life!Shame in those who sit in judgement of those like myself who suffer in silence.May God bless those who take a moment from their desperate busy lives to briefly show some compassion and empathy!After all nobody wants your sympathy just your understanding and a little kindness!😂😃😜😄

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    Community Voices

    Not All SWS Are Kids Anymore

    I can't say how many times I have come home from the hospital with paperwork that says "Your child has Sturge Weber Syndrome." I can't tell people how often a medical professional has to look up what Sturge Weber Syndrome is. I am frustrated by the fact that the "specialists" who actually deal with SWS only deal with kids, studies are for kids and the condition is treated in kids, not adults. What is seen as a "corrective procedure" for the same exact condition in someone under 18 is seen as "cosmetic procedure" over 18.

    Do we say that someone no longer has Down's Syndrome or any other gene based birth defect after 18? Do we stop treating them comprehensively because of a birthday? If not then why is SWS treated so? Our condition can become worse with age in some cases so we need assistance however, instead of having a single doctor familiar with our condition we have must find a collection of doctors who may or may not work together and be familiar with our condition. It becomes a merry-go-round of doctor’s visits. The treatments become a collection of calls and at times expensive repetitious tests between doctors which delay possibly getting better.
    Funny thing is no one is addressing the fact that as the children with SWS age this is going to become an increasing issue. If you dare move from your original location, your pediatrician drops your child or gets better enough to be independent enough to live alone and on their own insurance they will be forced into their own nightmare maze of doctors and medical care.
    So how do we fix this How do future generations avoid this difficulty No one deserves this kind of neglect ignorance and frustration. I call upon the advocates and parents to help their kids to help them grow into independent adults who can have a life. They may be able to do it to have a college degree have a family and child a job. I have done it with type 2 SWS and regret nothing. Advocate PLEASE. #swsadults

    PTSD as a Result of Parenting a Medically Fragile Child

    I find myself thinking a lot about time and how quickly it passes. I am noticing it in the face of both my kids — they no longer look like a little boy and little girl — they are becoming  young people too quickly. I find myself feeling guilty and angry for the years robbed of their childhood and our time together because one of them is sick. I have no idea how to make up for lost time and it eats at me, lingers just on the surface of everything I do. The damage that can be caused to the parent/child relationship when you are trying to care for your sick child is powerful. I do not know how to be sure neither one of my kids is not being damaged, lost or creating an unfixable breakdown within our relationship. It is difficult to find the balance when caring for your sick child and your other child. How do you decide whose needs should come first? How do you hear the cries of both and choose which door to open? During this battle of how to provide for the needs of both of my children, there is another battle I fight. I am finding PTSD is becoming more real for me. I am not sure if anyone around me can really understand what it feels like; the physical toll it is taking the way your body automatically reacts and the loss of control when this happens. This is what I have been left with as the past nine years catch up with me. It hit fast and hard this last year. Every time I have to go to an appointment, whether new or just a follow up, the feeling that follows and develops slowly as time ticks by is like someone is draining every ounce of fight and energy out of me. A huge sense of dread takes over and I have to swallow hard, bite down on my cheek and push it farther down, which gets harder each time. I am finding that all I want to do is say “enough” and just lay down. I am done and do not want to do this anymore. I am tired of having to hold my daughter down for treatments. I am tired of the new complications that pop up. I am finding it harder to ignore her cries and pleas to “make them stop,” promising she will be good if I will just stop them. Then there’s the medical field… they try to make it as easy as possible, but at times make it so much harder. They like to look at me as if I am not trying hard enough, give me that disappointed look if I haven’t done what they asked, as if on purpose, or tell me to just “do it this way” or “try this.” I usually want to scream at the top of my lungs at them and offer for them to spend a week in my life and then tell me how to do it all. They do not know or forget how many different doctors we see, the planning and experiences we have endured. I do not think they fully understand the trauma inflicted on you as a parent of a sick child. There are also those times when they are trying to help by being gentle, talking to my child about what comes next, asking permission and sometimes they talk too much. These approaches are with the best intentions, but they make things worse for me and this is when the PTSD comes back hard. I have to be the “mean one,” the strong one the one that seems heartless as I hold my daughter down and tell them to just get it done. During all this, the battle that I am fighting at the same time in my chest, head and throat, doing everything I can to fight back the tears, to not scream at them all to stop, is raging on top of me having to do my job as her mom. When it is all done, and till the next time, I am back home dealing with all I missed here. Coming back feeling defeated, tired and angry. This is where the cycle starts all over. I try to be present, available and calm, but eventually the things I am pushing down are just lingering under the surface and I overreact to the smallest thing. I react before allowing anyone a chance to explain. I forget my son, who is wise beyond his years, is still just a 11-year-old boy, I forget he is still a child himself, and then he reminds me how great he is by just knowing what I need, by helping out without being asked and by forgiving me every single time because he understands way more than most grown-ups. I forget my daughter didn’t ask for this life. I forget she isn’t trying to be difficult, she is just tired of being hurt, tired of not having her voice heard and just tired in general. My nights are usually spent worrying about the damage that has been done and the damage that may still come. Relieving the trauma of the days, weeks, months, years. Questions pop up: Have I changed the course of his path? Will he be resentful? Will I make a bad decision medically for her? Should I have stopped this or that? I fear the PTSD will win one of these times as it is trickling in to all parts of life. The shining light in my battle is that I have an unbreakable support system that allows me a breath, that provides balance, a safety net and so many more things I didn’t know I needed. This is one part that has kept the cracks from breaking fully, but another part is allowing myself to be open and honest. I recently said to a doctor during a very traumatic and difficult hospital admission, “I am finding it harder to handle the trauma of the past nine years.” I told her I needed her to understand this, I wanted her to know I wasn’t trying to be difficult and I get the importance of the medical treatment  they were recommending and fully planned to follow it, but I need a minute, and I needed her to meet me halfway. This is very hard for me to do. I do not like to talk about feelings, but the power of PTSD during this hospital stay was scary, and literally strangling me. My Advice: It so important to talk about your emotions and PTSD to someone, because the damage that can be done is unpredictable and detrimental, much more than we realize. I feel I was coming close. Do not allow yourself to get to a point where you feel there is no return. I believe the battle can always be won, we just need to ask for help, accept help and be open and honest with those around us. It won’t happen overnight and it is a lot of work, but so worth it in the end. When you can take back the power, it is a game changer.

    Community Voices

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    Miracle Flights Brings Rare Disease Children to UFC Fighter Finale

    With music pumping and lights flashing, round after round, some of the toughest mixed martial artists in the world battled to defend their titles. Friday night, in the Park Theatre at the dazzling Monte Carlo Casino on the Las Vegas Strip, the energy was contagious and the fans were wild! It was a night any sports enthusiast would have enjoyed. I was enjoying it — dancing to the music between fights, screaming at the top of my lungs in excitement, gasping when a round-house kick was perfectly executed, stomping my feet with the beat of the crowd. People were just staring at me… And the kids that were with me. What are you people looking at?! I screamed in my head, but I smiled my southern smile. So what? I was in a group with five kids on a Friday night at a UFC fight. These kids were having the time of their lives! You might know the stats on Sean O’Malley — that he’s covered in tattoos, has wild curly hair and his favorite move is the high-elbow guillotine. Or how about the stats of the first female flyweight champion of the UFC, Nicco Montano? She has a MMA 4-2 record and 1-0 UFC record and out-landed strikes in the finale fight 158-107. These fighters have some impressive stats. But, so do these fighters I brought with me. Jackson is only 18 months old. Did you know he was having over 100 seizures a day? Did you know he has to travel to his specialist located out of state for medical treatment? No. Because you just thought he was a toddler at a fight. Did you know the little girl jumping up and down, dancing with such excitement that you would have thought Justin and Selena were on stage, is Jackson’s sister? She had to spend nights alone with a sitter when her mom was in the hospital with Jackson. Did you know she could no longer get her nightly bedtime stories because mom and dad were doing everything they could to keep Jackson alive? No. Because all you can see is this ball of energy in a pink shirt enjoying the fight. Did you see the handsome young man sitting near me, with hair that he brushes to the right and sweeps over his eye? Did you know he has had over 25 surgeries on that eye? That his grandmother has to fly him all the way to New York to help him get medical treatment for Sturge-Weber syndrome? No, you didn’t. Because you won’t read about the stats of these fighters on any fan site. You can’t tell just by looking at them how incredibly tough these kids are. You can’t see the ongoing fights these amazing kids fight every single day. You can’t see the fight these parents and grandparents battle each day to secure the best medical care for their children and to pay for that medical care. These kids may not wear their battle scars on the outside, but they are continuously fighting. I am so proud I got to sit next to these kids at the Ultimate Fighter Finale Friday Night. I am so proud of Miracle Flights for providing free commercial airfare to these kids – and others like them – so they can get the medical treatment they need. I am so proud of UFC for acknowledging our Miracle Fighters and providing a night of fun and distraction for these families, who have been through so much. So if you were at the fight Friday night, you saw some amazing fighters in the Octagon. And you saw even more in the stands. We want to hear your story. Become a Mighty contributor here.

    Paul Siegel

    Learning to Advocate for Sturge-Weber Syndrome

    First off, I’d like to dedicate this article to my mother who passed from pancreatic cancer this past year. Because in the years I’ve been alive, no one believed I could be mightier than she. She was mighty herself. She had a “no nonsense” way of thinking and taught me never to believe I was a lesser person because of how others perceived me. That is my job, to make them see who I was and never to sell myself short. She believed all people with Sturge-Weber had a voice of their own, and it was up to those with the condition to be heard. No one should be doing it for us. We should not excuse ourselves from the normal things everyone else in society deals with. We have to face everyday life no matter how scary it is for us, or how judged or mistreated we are by others. In the end, she knew adversity was going to make me a stronger person in the long run. Even though it crushed her to see me come home after being beat up most days after school, or how scared I was in new situations, she knew this was all for the best to shape me into a proud, strong, independent and outspoken human being who knew giving up was never an option. In 1982 when I was born, Sturge-Weber Syndrome was barely a blip on the radar of medicine. It’s still not very present today due to how rare it is, but I am seeing more doctors with knowledge of it, and we have even finally discovered the cause. But back then, all doctors could say during my mother’s pregnancy was “he has a very healthy vascular system.” Once I was born, they doubted I’d even make it through grade school. My mother fully disagreed as she held me in her arms. “No, he’s going to be a college graduate, and he’s going to prove you all wrong.” My mother knew I had an uphill battle ahead of me, but as I grew and grew, I learned what she was teaching me all this time. You can’t give up. You can go slower. You can take the longer, harder road, but you don’t quit when it gets hard. It took me 15 years to graduate with a 4-year degree in college. Yes, 15 years. That’s not a typo. I kept being asked when I was going to graduate by people who graduated in four years, but never remembered what they learned, as well as people who dropped out or never went to college. I probably remember more from my studies than they ever will. From grade school to college, it was one trial and tribulation after the next. Getting teased, not understanding the work due to my shortcomings, not getting the support I needed, teachers not wanting to deal with me or understand my condition, and of course the many health issues over the years that come with having Sturge-Weber syndrome. There were morning seizures, temporary blindness from glaucoma and having surgeries for various issues, fatigue from thousands of milligrams of meds in your system, and of course the new problems that came with change and age. You can see now why it would take upwards of 15 years. But did I ever drop out of school? No! I took on as much as I could, even though it would only be anywhere from one to three classes at a time. Beyond college I am still facing trials and tribulations. Because of my appearance, limitations and a rather full personal plate, women still cannot look at me or bear to get to know me on a romantic level. Yes, I’m 34 going on 35 and I’ve never had a date. I was hoping I’d be married by the time Mom passed, but sadly that was not in the cards. I think life has taught me I need to find someone who possesses the same attitude as she did. Someone who believes in me and loves me for who I am, despite what all the critics say. That’s a very hard find even in the normal dating world, but I’m convinced that’s what is in store. My mother told me, “You’re going to find a girl in the same way she’s going to find you. She will have made a lot of past mistakes or had life challenges until she realizes there’s more to a person than a pretty face, and that’s when she will find you. She won’t be perfect, but you will be perfect for each other.” What do I want for my future? I want to be a writer. I want to share my story of Sturge-Weber. I want to enlighten, educate, and change lives and help pave the way so others with Sturge-Weber have a less complicated life ahead. All lives are complicated; every Sturge-Weber case is different. But even if I can create a smidgen of change, I’ve fulfilled my destiny. I fundraise, I have educated college classes of my condition, and I participate in studies. I do whatever I can to leave that mark of change. With Mom gone, I am fueled more than ever to be a warrior for this condition because I am tired of the ignorance surrounding rare disease. I am tired of the ignorance people show me, and how they see my life as black and white. To them, I am either completely useless or I am completely fine and have absolutely no issues, that it’s all in my head. These are the voices of people who do not truly understand the disease or the person dealing with it. This is where the change needs to happen. We are all individuals. Just because we deal with similar symptoms does not mean it affects us the same way. It’s time I raise my voice and say, “Don’t tell me who I am. Don’t tell me what I can and cannot do. Let me tell you about me and my relationship with Sturge-Weber.” To all those with Sturge-Weber, no matter how minimal or severe your condition, we must all be mighty. We must be mighty for ourselves and all of those with our condition. We must create awareness in order to create change for the future. Raise your voice. Be heard, just like my mother taught me. Love you Mom.

    Al DeCesaris

    Running a Marathon Each Day for Sturge-Weber Syndrome Research

    In each of us is the power to make a difference. This isn’t just rhetoric. This is something I wholeheartedly believe, something I’ve observed time and again. So when the cause of Sturge-Weber Syndrome — the rare neurological disorder that afflicts my 10-year-old niece Jenna, was discovered, I knew it was my time to help further the efforts to find a cure. I was determined to make a difference in Jenna’s life and in the lives of all those suffering with this devastating disorder. Thus, on the heels of my 2013 cross-country bike ride, which I chronicled in my book, “Crossing America For A Cure: A Bicycle Journey Of Inspiration And Hope,” I began training for a new charity event — a solo athletic endeavor that would have me running close to a marathon a day through 14 states down the entire East Coast. I suppose I could have come up with something a little less arduous (no doubt, my legs would have appreciated it), but I wanted to do something unique and eye-opening to create as much awareness and raise as much money for Sturge-Weber research as possible. My plan was to run (walk … and even crawl, if necessary) on average 22 miles a day for three consecutive months from Lubec, Maine to Key Largo, Florida. Picking up each day exactly where I left off the day before, I would cover every mile (every foot actually) down the coast. Now, it’s no secret I’ve never been much of an athlete. And I didn’t have the running experience that would lead one to believe I could accomplish something this ambitious. In fact, even though I planned to run close to a marathon a day, I’d never actually run a marathon. Still, I have something within me that I knew would make this seemingly impossible task achievable – purpose. My purpose is my desire to help my beautiful young niece Jenna live a better life. For her and because of her, I am inspired to fight Sturge-Weber Syndrome on her behalf. Jenna is the youngest child of my sister Ida and her husband Ed. She’s playful, spunky, and perseverant, and has a smile that lights up her face. Yet, even with her high-spiritedness and determination, because of her medical condition Jenna has had a very difficult life. Sturge-Weber Syndrome is a congenital, neurological disorder that causes abnormal blood vessels to develop in the skin, eyes, and on the surface of the brain. Although it manifests differently in each person affected, for Jenna it has resulted in a pronounced port-wine birthmark on the right side of her face (from her hairline to the lower part of her cheek) and glaucoma in her right eye. Despite the severe problems these conditions present, it’s the abnormal blood vessels on the surface of her brain that pose the greatest threat because they often lead to other serious health complications including seizures, strokes and stroke-like episodes, impaired motor coordination, paralysis, developmental delays, learning disabilities, migraines, mood and behavior problems, and even death. Over the years, Jenna has suffered debilitating seizures and stroke-like episodes, which have left her physically and mentally impaired. To see her suffer on a daily basis is heartbreaking. Yet, her bravery and resilience, as well as Ida’s tireless and unwavering dedication to her well-being, are truly inspiring. With Ida leading the way, not long after Jenna was diagnosed, my family and I began our volunteer efforts to create awareness and raise funds for the research and treatment of Sturge-Weber Syndrome. Since then, we have hosted numerous charitable events which have created considerable awareness and raised over $1,000,000. This money has directly supported the work of the Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute, and helped fund research that led to the discovery of the cause of Sturge-Weber Syndrome. Since shortly after her birth, Jenna has been in the care of Anne Comi, M.D., the Director of the Hunter Nelson Sturge-Weber Center and co-author of the research that produced the ground-breaking discovery. According to Dr. Comi and the other senior authors: Jonathan Pevsner, Ph.D., Professor in the Department of Neurology at Kennedy Krieger Institute, and Douglas A. Marchuk, Ph.D., Director of Molecular Genetics and Microbiology at Duke University School of Medicine, Sturge-Weber Syndrome and port-wine birthmarks are caused by a somatic activating mutation in the GNAQ gene. “This is a complete game changer for those with Sturge-Weber Syndrome and the millions born with port-wine birthmarks,” said Dr. Comi. “Now that we know the underlying genetic mutation responsible for both conditions, we’re hopeful that we can move quickly towards targeted therapies, offering families the promise of new treatments for the first time.” Although much more research must be done, the study, published on May 8, 2013 in the New England Journal of Medicine, brings researchers closer than ever to a cure. “This is a giant step forward,” said Dr. Comi. “We have real hope in the next five to ten years, perhaps sooner, perhaps a little longer, that there will be…new treatments and perhaps even a cure for Sturge-Weber Syndrome.” Notwithstanding the progress that has been made, because Sturge-Weber Syndrome is so rare (affecting only 1 in 20,000 individuals), funding for research has been difficult to obtain. For this reason, raising private funds to support ongoing research is critical. With the hope that this event would help the doctors continue their vital work, I set out to run the coast. Now, I didn’t know what the journey would bring, 20 miles and a major injury or 2,000 miles and a successful run all the way to Key Largo, Florida. But I did know that as long as my body would allow, I’d continue to put in the miles each day for Jenna and all those suffering with Sturge-Weber Syndrome, so that a cure may one day be found. Follow this journey on Running the Coast for a Cure The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. Check out our Submit a Story page for more about our submission guidelines.  

    Crystal Hodges

    When Your Rare Condition Feels Like the Boogie Man

    Have you ever been afraid of the dark?  Or cried out to your parents with a trembling voice in the middle of the night, “The boogie man is under my bed!” Parents know there’s no such thing as the boogie man. Yet, like a knight in shining armor, they run into your room, turn on your light and check your closet and underneath your bed. In the last year, I’ve struggled with an adult version of the boogie man. To give a little background: I’ve had migraines since the age of 6. I remember my very first one, actually. It was so severe and three-fourths of a lifetime ago that some of it’s a blur, but I remember it. My head was throbbing, feeling like a man was in my head, using my brain as a punching bag for his boxing practice. Mom was worried. An icepack sat upon my head, and any time I tried to lift it off the pillow, the excruciating pain intensified… and I cried. A lot. After my first migraine, I got them enough to have a special prescription to help with the pain, but only needed to take that about once every four to six months — although, because I got them so young and would talk about them as a child, I remember many people thought I was just exaggerating regular and simple headaches. In 24 years, I’ve seen a few doctors on the subject, ranging from a neurologist, geneticist, and a Sturge-Weber syndrome (SWS) specialist (we’ll get to that in a minute). All have told me that while some children get migraines, it’s rare for a history of migraines to start in 6-year-olds, even for someone like me, whose family has a background in the area of migraines. Crystal as a baby There’s a topic I haven’t written much about. Some of you know I’ve written about my journey with a vascular facial birthmark, a port wine stain (I’m also in the the process of writing a book, so stay tuned for more information). You may or may not know that my birthmark is way more than a skin pigmentation condition. It’s caused by extra blood chillin’ in some of my blood vessels. And depending on a case-by-case scenario, the depth of this “birthmark” varies (I put “birthmark” in quotes because there is way more to a port wine stain than meets the eye.) In my case, it does affect the coloring of the left side of my face. However, it goes much deeper than that. It’s in my left ear, in my left nostril, on the left side of my gums, and on the roof of my mouth (once again, only on the left side). It also goes all the way to my brain, and affects my (left) eye. While I’ve had migraines since the age of 6, I was diagnosed with glaucoma at the age of eight. Since then, I’ve had to use eye drops twice a day, doing my best to keep the pressure in my eye stabilized so I don’t go blind. By the time they realized I had glaucoma, I had already lost a little bit of vision — but “not enough to tell.” Not everyone’s facial birthmark reaches their brain. When it does affect the eye and/or the brain, however, that child may have a second condition: SWS. But here’s the thing: I have SWS. I’ve just never spent much time writing about the condition because it freaks. Me. Out. My doctors were confident I had it since I expereince migraines and my eye is affected, but they weren’t 100 percent sure I had it. It’s a super-rare condition and they pretty much (admittedly) know nothing about it. It wasn’t until October that I saw a team of SWS specialists (for free) and got an official diagnoses, thanks to The Vascular Birthmarks Foundation and their annual conference. Crystal as a young girl Once I had the official diagnosis, and even though all my other doctors were only about 80 percent sure — my chart only said something along the lines of, “likely to have SWS” — just in case any new symptoms were to appear. But with an official diagnosis by one of the best SWS specialists around, I finally felt like I could claim it as my own, and I officially had the right to write about it, even though it still has taken me nearly 5 months to write about it on such level of depth. There’s so little that is known, but the stuff that is known terrifies me. Google SWS, and it’s not light reading material. Just like any condition, the severity level varies from person to person, and can include seizures and impaired mental and physical development. Like myself, if the port wine stain touches the eye, you can develop glaucoma. Many people with SWS experience migraines — and that’s the just a small portion of the list of the stuff that is known. While I have MRIs every couple of years to watch the blood vessels near my brain (and have done this since I was a small child), I didn’t start having questions about my condition until a few years ago. Once I had lengthy list, I went in to see my trusty neurologist. This is how our conversation went: Me: What’s up, doc? How are you? Doctor: I’m great, how are you? Me: I’m doing well, but I have a ton of SWS questions for you. Doctor: OK, what’s up? Me : Alright…Question number one! ( *Insert whatever the question was.) Doctor (with a deer-in-the-headlights look) : I don’t know the answer to that one…Truthfully, in all my years of practice, you’re the only patient I’ve ever had who has SWS. You probably know more about the condition than I ever will. Me: Oh, OK. Well, by chance, do you know the answer to this question? (*Insert question two here.) Doctor: (deer-in-the-headlights part two)… Me: Oh, OK. Never mind. Do you know of any neurologists who specialize in SWS, or have more understanding and knowledge on the topic? Doctor: I’ll find out for you. And that was about three years ago, and she’s not yet told me of a SWS specialist within my health care’s organization. Even my laser treatment doctor hasn’t been able recommend one to me. And I ask…a lot. Since my doctor didn’t seem to have answers, I’d turn to Google for them instead. But even then, there was only a 50/50 chance of finding my answers, so I stopped asking — until May of last year, which was when my brain became a hot spot for migraines. That month is a blur. I just remember staying in bed for many of the days, my head under a pillow to block out the light, migraine medication by my side.  The migraine was a constant, month-long torture, often buddy-systemed by blurred vision, weak muscles and stomachaches. Did you know there is such thing as a “silent migraine“? That means the sensation of the headache may not be felt, but the other symptoms such as blurred vision may be present. Sometimes with a migraine, I can function. I may have to wear sunglasses inside, but I can pull it off. But, after about two weeks, they progressed. I started canceling on friends. My weekends were spent in bed. Church was missed. And then I started missing a few days of work, which is when I knew I had lost control of all the pain and my body. Barely functioning with some cool sunglasses swag wasn’t even on the table anymore, and my questions started to build up again. During my recent appointments with the geneticist and SWS specialists, they all agreed, “While your family has a history of migraines, I’m confident this is your SWS as you started to get them at the age of 6, which is not normal for a child that age.” Since May, I’ve found myself taking migraine medication two to three times a week, depending. Sometimes it’s more as a preventative measure when I feel one coming on, sometimes because it’s the full, real deal. And then this week happened. Sunday I had an “I can’t lift my head up off the pillow without crying” migraine, and I just woke up to a similar one a few hours ago. Crying, I told God, “I don’t like my brain. Wait, strike that, I like the contents of my mind, I’m just really mad at the actual organ right now. Oh, never mind.  You’re God — you know what I mean.” Until tonight, I’ve thought, “SWS scares me. It freaks me out.” But I don’t think I had officially told that to God. My assumed SWS migraine symptoms have drastically changed in the last year, and that scares me. Seeing how that has changed, I can’t help but wonder if anything else will change. While most people start having seizures as young children, there have been cases where SWS patients develop them as adults, some in their 50s — and that’s my biggest SWS fear. In the last year I’ve bounced back and forth between two different “Why me?” questions. “Why me? I can handle the birthmark. I’m fine with that part. But why do I have to struggle with migraines?” I ask in frustration. “Why me? Why, out of all the people with SWS who have seizures and other serious symptoms, do I only have migraines and glaucoma? Why, for the most part, do I get to go out and live a life that many with SWS cannot?” I inquire out of curiosity and an odd sense of guilt. Along with the occasional “why” questions, the fear questions are also triggered. “Are seizures next?” I wonder. “Will my migraines worsen?” I fear. I’ve never been one to play the “if” game very often. Not until this last year, and I don’t like it. Thinking back to my childhood, I don’t remember being afraid of the dark. I must have been afraid to some extent, though, as I remember falling asleep with the light on for many nights. In fact, I think this was my first round playing the “if” game. When I went to bed with the lights off, the room was dark, and in darkness, you can’t see. Where there use to be walls, there appears to be an endless amount of the unknown. What if I was thirsty, and couldn’t find my water cup in the night? What if I knocked my cup over during the search? What if something scary lingered in my room, or in my closet? There wasn’t anything scary lingering around in the daytime or with the lights on, but what if that changed as the darkness crept in? And that’s how my journey with SWS feels. The light used to be on. I knew I had an occasional migraine and I have glaucoma. But when my symptoms began (and continue) to change, and the migraines started to come on a daily basis?  When I have a migraine for two weeks (or a month) straight? The light is turned off and I can’t see anything. I’m afraid of what might be lingering in the dark. I’m afraid of the boogie man. My life verse has been Jeremiah 29:11, “‘For I know the plans I have for you,’ declares the Lord, ‘plans to prosper you and not to harm you, plans to give you hope and a future.’” Throughout different seasons in my life, I’ve been clinging to this verse — just like my recent journey with SWS. I don’t know what my future holds, but whatever it is, my God is “bigger than the boogie man. He’s bigger than Godzilla or the monsters on TV. Oh, God is bigger than the boogie man, and He’s watching out for you and me.” (“Veggie Tales,” anyone?) I believe He also has a plan for my life, even if I never understand the full plan, and even if I never find the answers to my big “why me” questions. Follow this journey on The Travelin Chick. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.