The Sturge-Weber Foundation
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I wish you all the very best and stay strong. :-)
Noxiet 1 month ago in playlist Sturge-weber
Im 29 and i have SWS. Unfortunately i was just diagnosed (last year), in Switzerland. Im from Greece. Although i was born with wine stains (left eye and a smaller on my left forehead side), plus almost blind there, noone of all the doctors who checked me since i was 4, could tell it was SWS. They all said that i was born with a ''lazy'' eye. And that cause i didnt had any other effects (seizures etc). I will continue treatment from glaucoma in Switzerland and everything is going really well :-)
Noxiet 1 month ago in playlist Sturge-weber
My Little Brother has Sturge Weber Syndrome and Its just so hard I cry every day just thinking about what would happen if somthing happened to him and he wouldnt be here anymore. I love you Colten so much I dont know what I would do if you werent around.
ilikechicken1910 2 months ago
@Sloris21 It depends on the severity however since it is and “orphan disease” it is really hard to get disability seeing how it does not fit in “the box” It is honestly easier to get SSI disability if you are addicted to drugs or fat and Lazy than if you have a really problem such as SWS.
MarlaBlackandPink 6 months ago
is this considered a Disability to collect SSI with? someone message me i know someone with it that doesnt work or do anything.
Sloris21 6 months ago
I Am kinda sick of all these vids of kids with SWS I have this disorder and I am 23. I personally would like to hear more about ppl my age with SWS rather than parents. I understand It effect the family too but I would like to hear more from ppl who actually have lived with this. Just saying
MarlaBlackandPink 7 months ago
@maurihh79
sonnyrego1 10 months ago
Our son was just diagnosed with SWS. He is 10 weeks old with a port wine stain on the left side of his face. Today he had surgery on his left eye for glaucoma..wishing luck to everyone who faces such a unpredictable condition...
BlyPatr 1 year ago
Yo tengo un Klippel Trenaunay en la pierna izquierda tengo 30 años soy de España no conozco a nadie con esta enfermedad. Gracias.
maurihh79 1 year ago
My daughter was recently diagnosed with SWS. She is 15 months old. We live in Sweden and do not have any foundations because of this rare diagnose. Thank you for writing, it makes me feel very optimistic :)
Anyone like to share how SWS has affected their lives, please write to me. Katarina Öhman Andersson on Facebook :)
katarinaAohman 1 year ago