Newly dx bws in philly area

I'm from the Philly area and my daughter is going through genetic testing for bws. I'm looking for a local support group or if there is anyone that is also near the philly area. I look forward to hearing from others. I'm just new to this and scared. Any help is welcomed.

6 Replies

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  • I'm sorry I don't know which area you mean? In the UK we don't have any area support groups.

    I understand this is a difficult worrying time for you. But be assured the vast majority of children with BWS grow up without any major difficulties. My son is now 15 and doing well. He is very tall and broad and still has weak abdominal muscles but otherwise no lasting effects. He had tongue reduction surgery at 20 months at GOSH.

    Even if your child is diagnosed with the BWS subgroup that puts them at a higher risk of tumours the risk is still very small and they will be regularly screened.

    Is there any particular information we can help you with? Have you had a look at the group's website, you may find it helpful. Www.bws-support.org.uk.

    Please come back and ask any questions you have and I will try and answer them.

  • Hi,

    This is the best

    facebook.com/groups/7835762...

    There are people from all places!!! You can contact them by this page.

    Best regards,

  • Hi, i'm unsure as to where you live if its caerphilly in uk or elsewhere. There is a support group on facebook that you can join to get some advice or ask questions. I live in Aberdare, south wales and my daughter has bws. She's 2 now and she is just like any other child her age.

    Its a worrying time with all the different info available and tests but most children grow up without any complications.

  • Hi,

    My family lives right outside of Philly.

    My daughter is due April 4 ,2016. Her baby was diagnosed with BWS. Her and her husband had their first appointment with the doctors at CHOP last week. She will be under the care of the doctors there and will also be having the baby at CHOP – their next appointment is not for another two weeks. I will let you know if they find out about any support groups in or around Philly.

  • thanks, good luck to your daughter and family! congrats!

  • You are in great hands, since there is a support group online on FB and it is active. Plus there are members there that live in PA. The best doctors are at CHOP and ask for Dr. Kalish, she is researching BWS and it the number one person to get info from!

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