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Which advice would you give to someone who has just been diagnosed with Sturge Weber Syndrome?
Advice for the newly diagnosed with Sturge Weber Syndrome, written by people who have lived it. What they wish they had known on day one.
Get networking and involved with others and you will get support as you are not alone
Posted Apr 26, 2017 by Gill 1150
Sturge-Weber Syndrome is never the parents fault. They did not do anything to cause this to happen to their child. Take your child to a neurologist, dermtologist, and opthomologist. Watch them closely. Although your child will exhibit the symptoms of sturge-weber the severities. do not be overprotective. Let them flourish like a normal child. Teasing will occour, but instead of getting mad, teach others about your child's condition. Awareness goes a long way. Make sure they get the appropriate help so they may succeed in school. Every Sturge-Weber child is different and will have differing life challenges.
Posted Apr 27, 2017 by Paul 1726
Joint an online group for support and info, and take one day at a time.
But hey… YOU CAN DO THIS !!!
But hey… YOU CAN DO THIS !!!
Posted Jul 10, 2021 by Stacey 700
