Sturge-Weber Syndrome Community

Dear friends,

Was touched to read about your courage in dealing with SWS. I have a friend whose daughter suffers from the syndrome. Though he has contacted the best of doctors and they are treating her as best as they can, I do feel he should also reach out to the larger community of SWS people. But he refuses to do so, perhaps fearful of hearing more bad news. Can anyone help or advise?

Chander Suta

Chander:

You are a good friend. Just continue to support and listen to him. I don't know if he has visited our website, or other SWS sites, but there is a lot of information on the Internet. Without knowing the severity of his daughter's condition, it is hard for me to offer advice, but I will say this - many people with SWS live happy, productive lives. I know many adults living with SWS who are successful and self-sufficient.

If one day he decides to reach out, we are here to help.

Glenda, SWSC/VBF

Thanks Glenda, I think sooner or later he will eventually reach out to others. His daughter's problem has recurred after a gap of five years, just when they had begun to think that it had gone away. So, a progressive deterioration is certaininly there. Surgery is also not an option for them.
Shall convey your message to him.

Thanks once again

Chander Suta