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.