In the age of thirty-one I have always committed to success standing strong ,the words were told me when I was a an elementary school pupil that stronger the winds Thougher the Trees which I do remember when confronting conflicts.My dad and mom, I see they have done so much for me to overcome those times 'electricity discharge ' in my brain not only taking me to the physicians in Turkey but also in US.
Keeping good mood during my school time was the key to make me able earning high school degree thru twelve though times.I had never been humiliated by the classmates,teachers and others because of my port wine stain on my face,just around eyebrow zone,.Even,during seizures I'd experienced on the gounds in the school ,surely could not know what happened when unconscious,in the wake friends or the others given hands compassionately.
SWS not known so much in Turkey,during inadvertent seizures outside our premises those who encounter stereotyping epileptic attacks.Indeed,the attacks resemble epileptic onesy but not because of suffering from epilepsy,what I was told epiloptoid should be said rather than epilepsy.
I earned my twelve grade in Istanbul and then, we moved to the neighboring small city.As mom is a licensed pharmacist,we set our modest pharmacy and I’ve been working as half-timer.I enjoy photography ,like playing PS games.All what I know about SWF,my dad keeps telling time to time.
I spend efforts to improve my Engish and look forward to meet the other specials at an event in USA which to be organized by SWF in near future.
I share my hopes with you that those scientists would do bring innovations in many ways that making the life easier for us.
All the best,
Mert-Tekirdag,TR
When my 6 year old daughter was born, the first thing my husband and I did was look up complications associated with having a Port Wine Stain. One of the things we came across was something call Sturge-Weber Syndrome. We read that it was present in 8% of babies born with a PWS over their eye. We didn't even read past that because we both thought it was such a small chance and it couldn't happen to our daughter. Well 6 days after she was born, she started having seizures. The next day she was diagnosed with SWS. I contacted the SWF after getting home from the hospital. The first thing I was told was that it was not my fault and that there was nothing I, or my husband, had done that caused our daughter to be born with SWS. She told me to enjoy my baby and that she would email me information about doctors in our area. Hearing her tell me to enjoy my baby and that I was not alone was the BIGGEST encouragement for me. Throughout the last 6 years, I have attended mini seminars and have learned more about how to advocate for my daughter. I've also connected with parents online whose children also have SWS. It was these connections that gave me hope for my daughter's future. I would've never been introduced to these families, doctors, or resources had it not been for the Sturge-Weber Foundation.
The Sturge-Weber Foundation is so welcoming and makes everyone feel special. Especially individuals living with this rare disease. I have gone to two international conferences they offer and they were so informational, fun and made us families with a member with this condition feel not so all alone. I will be forever grateful for this and the Foundation itself! He now has a family of his own!
Hello. I want to tell you about my daughter Susan. She is a Sturge-Weber angel.
When she was small, she was given a lot of medication to control her seizures, but she never achieved good seizure control from medication. When she was 6 years old, she attended a conference of the Sturge-Weber foundation in Parsippany,, NJ. With her father, brother and me. It was an amazing experience, because we suddenly realized that we were not alone with our struggle. We received so much moral support, we felt like we were part of a big, loving family. There we met a family who had a 14-year-old son with Sturge-Weber.
He was taking less than 300 mg./day of tegretol, and experiencing good seizure control.
Susan was taking 1,325mg./day of tegretol,
and having an average of 20 seizures a day.
He was a young man, and she was a frail little girl. She was also having insomnia so severe, she was only able to sleep about 3 hours a night. When we got home, I asked her doctor to reduce her dose. He wasn’t comfortable with that, so we got a new pediatrician. Soon after that, we admitted her to hospital, because she was given phenergan for nausea, and she became so lethargic, she stopped breathing.
At the ER, we learned that her tegretol level had increased from 3, to 24. We were told it should not surpass 10. It was a drug interaction, that was unforeseen, because her high dose of tegretol made the reaction more severe.
The fact that her drug level did not accurately reflect her toxicity, caused confusion.
In the hospital, her new doctor came to see
That Susan doesn’t tolerate medicine very well.
He reduced her tegretol dose to 75 mg over the next 5 years. Even on that small dose, she still was having breakthrough seizures, and not sleeping well. He D/C ‘d the tegretol, and she slept 10 hours the first night. Her seizures stopped for 8 years. We focused on nutrition and exercise, and FUN! We made up for lost time. At age 19, she moved into a group home, to further her independence. She did very well at first, but they would not comply with her food plan, and she started having seizures, and the related problems again. They pressured her doctor to put her back on medication, without our consent or knowledge. She went back and forth from our home to several residential placements, always with the same result.
It seemed that she could have good physical health, or an independent life with social opportunities with her peers. But not both.
Without good health, she couldn’t enjoy the social opportunities. And without social connections, her physical health would suffer.
She experienced depression. At present, she is in a supported living placement, where she did well at first, because her body was strong, but regressed due to non-compliance with her nutrition and exercise needs. This time, bringing her home is not an option. Mom and dad are divorced, and we are senior citizens now.
Susan needs the support of the Sturge-Weber foundation again. This time, I want her thriving plan to be very public, so that it cannot be misunderstood again. Her thriving plan includes 4 needs. Nutrition, exercise, mental stimulation, and restorative sleep
The insomnia, is light seizure.activity.
The plan works by improving blood flow to, and more importantly, from the brain.
I want to bring Susan to Baltimore. I want her thriving plan to become more accepted as an alternative to medicine, by the medical community. We have 6 statements from doctors stating “follow Susan’s super hydration plan, as per mothers’ instructions, for seizure control”
One of these statements is from Dr Warren Lo, in Columbus, Ohio. Still, we need an endorsement from the Sturge-Weber foundation, in order to be heard.
Thank you for your time in reading Susan’s story. I look forward to showing you what we have learned, and how it has kept Susan well,
-mom-
I can't put into words how supportive and helpful The Sturge-Weber Foundation is, but I will try. From initial diagnosis at birth to current age of 6 years they have been with our family every step of the way. Rare diseases can be so isolating and SWF not only engages top specialists to bring the latest breakthroughs to patients, but they also bring families together. We have countless resources from engaging with SW Foundation all of which we use on a regular basis. Our daughter needs eye surgery for glaucoma and the first thing we do is engage with the foundation to connect with specialists and talk to other families that have been through the surgery.
Their relentless journey to improve the lives of patients with Sturge Weber is so uplifting and gives us all motivation to keep fighting and hold onto hope for a cure. To top it all they are just incredibly nice people who take the time to get to know families and consistently go above and beyond. I am certain our daughter wouldn't have the quality of life she enjoys today without the guidance and support of The Sturge Weber Foundation.
I love the people in this foundation and what they do. They are such great patient advocates and so responsive to patients, families, and medical professionals. They also continually work to advance the science and care for people with Sturge-Weber Syndrome.
The Sturge-Weber Foundation has been a source of comfort and support for almost 20 years now. Our oldest daughter was diagnosed with Sturge-Weber at age 3 and the SWF has helped us navigate the ups and downs of this rare disease. They provide networking among families and hold a conference every other year so we can all get together to learn new things and make new friends. Thank you, SWF, for helping all the families!
The Sturge-Weber Foundation has been an important part of ourjourney as parents of a child with Sturge-Weber Syndrome. They have provided important information for his medical care and have always been there to guide us with any questions or concerns. The foundation has also supported research that is laying the groundworkl for new treatments.
I have worked with this organization since 2020 and value the work they do in so many different areas to support patients and families living with SWS! Their work is so important and they do so much to support this community!!
When our daughter was diagnosed with this rare disease we felt so alone and scared. This foundation not only connected us with other parents, but also with specialists around the country. They help facilitate care with the small network of health professionals who understand this disease. They support research and innovation and advocate. Our daughters care is better because the SWF exists.
The Sturge Weber Foundation gave us peace of mind when our daughter was a day old and diagnosed with Sturge Weber Syndrome. They helped us understand the cause and appropriate treatment and support team. We love going to their family conferences and participating in their virtual events throughout the year. We are so thankful for them!
When my son was born in 2011, my joy turned to terror as I google Port Wine stain and learned about the potential that he had Sturge Weber Syndrome and read about the complications could ensue. Within weeks, I contacted the Sturge Weber Foundation, and their kind voices assured me that I could weather this storm. They helped me be seen by a neurologist who had a waitlist a year long within weeks. They educated me via seminars. In the years since, they have become so much more--funding important and crucial research to improve the lives of so many. Even though my son appears to not have Sturge Weber, I just attended a mini summit they sponsored yesterday as he does have glaucoma and some complications from his PWS. I am so grateful to this organization for everything they do!
The Sturge Weber Foundation is an amazing group of people who are so warm, inviting and knowledgeable. They partner with incredible doctors who take the time to get to know their patients and help share information. My family has found a welcome home within this organization and the events they put on really showcase their dedication to helping everyone whose life is someway affected by Sturge Weber.
Almost 3 years ago my wife & myself physically visited the Sturge Weber Foundation's office in Houston Texas. They were surprised to see us because their work is done mainly on line and telephonically. At that time our grandson was incarcerated in a mental health facility, which was definitely the wrong place for him because he had SW. With their help we were introduced to the correct facility and Doctors in Austin. My grandson has had the surgery he so desperately needed thanks to the intervention of the SWF. Still today we call it DEVINE INTERVENTION. Thanks SWF, we feel you saved his life.
The Sturge-Weber Foundation is the only of its kind for patients and families with this rare condition. It’s evolved so much over the years into a valuable resource, an inseparable family, and a motivated community devoted to pushing the science and improving the care of families everywhere. Without it, I don’t know where we’d turn to unite those impacted from around the world.
I lived for over 60 years with a "seizure disorder." A name wasn't given to it until the neurologists at Mayo saw my brain MRI. Thirty minutes later they introduced me to Sturge Weber Syndrome. I am very impressed with all the support, especially for children. More help needs to be provided for adults suffering with the uncertainty of our future and the changes that we experience as we continue our journey.
The people that work with the foundation are amazing and selfless, the doctors are devoted. I am very impressed with all of the wonderful, knowledgeable professions and volunteers. Thank you for all the support and answers to the crazy questions I ask.
As Sturge-Weber Syndrome is extremely rare, when my baby was first diagnosed, I didn’t know who to turn too. Even doctors hadn’t heard of it, most nurses didn’t know what it was and I felt lost in the moments. Thankfully I found the Sturge-Weber Foundation and they have been my biggest support ever since. They have provided me with one on one support, answered many questions that I couldn’t find the answers too and even sent out little things to help my child on his journey. I honestly don’t know where I would be without them this past 22 months. I couldn’t thank them more nor appreciate them! I just hope they get the recognition they deserve.
Our daughter was born in 2020, and we found out at 4 days old that she has Sturge-Weber Syndrome. We had never heard of this before and were desperate for information. The Sturge-Weber Foundation has been a big help in learning more and has helped us to meet other children and families going through similar experiences. We are grateful for the support of the foundation and the work they do to raise awareness and further research for this rare neurological disorder.
Our son was born in 1994 with the Sturge-Weber Syndrome diagnosis. He had a port-wine from the very minute he was born. Since this was a rare condition, thankfully someone told us about The Sturge-Weber Foundation. They have been there every step of the way! At first, we were in contact quite a bit. Now that our son is 29, the contact is as needed. But, they are there when we reach out and that is HUGE!! They have answered many, many questions and have provided vital information to us on SWS. We thank the SW Foundation for all they do for families like ours!
Our daughter, to be, was born on a Monday night in 1987 in a military hospital. We saw her for the first time on Tuesday morning and was told they were going to hold her in ICU while they determined a few medical issues. We spent most of the day with her to keep her company while she laid in her little ICU box and fell in love with her. The on-duty folks were not sure about what the girl was experiencing and were reluctant to share with us as were were not related to her. However, the bio-mom had given the permision to be there until the adoption could be completed. We lucked out in one way as there was a doctor in that military hospital that knew a little about Sturge-Weber syndrome and shared that info with the other doctors.
On Wednesday we met with the baby's doctor and he spent hours explaining what he knew about the syndrome, the expected problems the child would probably have (worst case scenario stuff) and his reasons on why we should NOT adopt her. His opinion was to let the State take responsibility for her care and place her in some institutional setting. We had been temporary foster parents for around ten babies in the State's care by then and somewhat knew how the State would be handing the child care so we basically disregarded the doctor's adoption advice.
Thursday we spent our time researching. Remember this was before the Internet was easily available or search engines like Google so we tried to do our own research on port-wine birthmarks and Sturge-Weber at the library. Wow! Not a big fat zero on information but pretty close. The encyclopedias back then only had one or two line definitions on Sturge-Weber and it was mostly medical words that we had to look up to get some understanding of the Sturge-Weber definitions. We were at a loss on where to get better information. However, the doctor that was the hospital's "expert" was actually aware of a lady in Colorado that had a child with Sturge-Weber and she had started gathering information about Sturge-Weber. He even had her phone number. So after our info failure at the library we called the number he had given us and was introduced to Karen Ball for the first time. Karen was a Godsend of information on Sturge-Weber and she explain her plan for the SWF. Karen's info & the SWF being available helped tremendously with our decision to continue the adoption process. We turn to them many times through the years for more information.
On Friday our "good old boy" lawyer called to inform us that the judge had approved our adoption application and Teresa was now our baby girl! Oh, our lawyer kept in contact with us through the years as we moved from base to base. When Teresa was about 5 he called and asked if we wanted to adopt another baby. Wife had kept her driver's license from that state and we had an address there for mail so in 1992 our son became part of our family. It took 7 days to complete the process this time because of the weekend between birth and application approval.
On a sadder note, the doctor had been right in his medical predictions. Teresa became one of those children that had almost all the bad things happen to her. We spent lots of time seeing doctors and the inside of hospitals through the years. We feel Teresa had a good life despite all the things that happened to her but lost the fight in 2022.
The Sturge Weber Foundation became my new home 14 years ago when my daughter was born and has been so helpful and made sure I had the resources I needed.
Thank YOU!
My son has this rare disorder. The Sturge-Weber Foundation gave us information and support when it was hard to find. They support and connect families and patients, connect patients to the appropriate care, host informational forums and conferences, advocate for government support, and most importantly fund much needed research. Not only have they changed the face of Sturge-Weber Syndrome, they have given this orphan disease a voice.
My daughter was born January 2011 with a rare Syndrome known as Sturge Weber Syndrome. Sturge Weber only effects 1 in 200,000 births. So imagine being told your child has a rare syndrome that when u tell others they ask you to repeat it . Most medical professionals have not even heard of it. So when I found this organizations it was a life saver it contects me to other families, it provides me with a voice, it lets me know im not the only one out there facing this. The foundation has provides me with extremely helpful information and keeps me up to date on breackthroughs or testing being done to help cure this terrible syndrome.
We adopted a child with extensive Port Wine Stain and complications from it. The complications are soooo incredibly rare, that 2 top Vascular Anomalies reviews disagreed in some areas as to what is what with our son. And thus any recommended care from the doctors has been limited and not very helpful to us, as parents.
By far and away, the most helpful help we've gotten in dealing with our new son's complex medical and learning issues has been the Sturge-Weber Foundation and the parents in their parent support group! SWF has sent us a book to help Josh know he's not unique in appearance :-). They sent us ER cards to have on hand in case of more serious injuries in his Port Wine Stain areas (special sutures and bandaging needed). And they've sent us info cards to hand out to curious strangers. The parents have greatly helped me with day-to-day care questions. I could only wish ALL medical support groups were as organized and helpful as this one! (we parent 3 other children with different special needs).
My daughter Carlie was born Sept 10, 2010. I remeber my husband and I telling the family about this cute Port-Wine birth mark she had on the right side of her face. A following day the doctor's told us that Carlie migt have some medical issues becuase of her birth mark. They wanted us to see an eye doctor and a neurologist only we were out of the hospital. Still no big deal right. The third day, while we were getting ready to go home, the doctor mentioned Sturge-Weber. When we got home we decided to look it up, BAD IDEA! The internet gave us so much information but it was all so scary. They we found The Sturge-Weber Foundation. I registered as a member, even though we didn't know if Carlie had Sturge-Weber or not. I got a wonderful welcome from Anne Howard and different materials to share with Carlie's older sister Sophia (3 at the time). I joined the yahoo group and started to read of the struggles and triumps of all the other Sturge-Weber families internationally. I got reassurance when I thought I couldn't deal with things. I got other people's advise on how to get doctor's to listen to me and how to get into the doctor's I wanted. I was able to use the materials from the website to show our insurance that Carlie's laser treatments were NOT strictly cosmedic. They have been the lighthouse on our rocky shore in the middle of this ever changing storm. Although Carlie has still not been diagnosed with Sturge-Weber I am truely greatful to have found the foundation and their support and help has been overwhelming.