Hi, My name is Donna Newman and I have a 17 year old daughter with FHS.
I have been blessed to get to know many of the other mothers,and
fathers, through the FHS website. We are all trying to help each other.
Dr. Feigold from Boston hospital is currently envolved in a study, and
has contacted many of us. When I ask my doctors, they haven't heard of
any reports of short life expectancy BECAUSE of FHS, but there are so
many symptoms that these sweet angels seem to accumulate in addition to
FHS> I would love to communicate with you, especially about issues of
puberty, that I am sure you have dealt with. Feel free to email me.
donna

--- In floating_harbor_syndrome@yahoogroups.com, "southernbelljt"
<jtolson@a...> wrote:
> Hi .MY daughter is 20 years old and she was just diganost with FHS
> afew years ago dose anyone have any idea how long this childern live
> Ive not heard yet if anyone knows any thing it would help
> Thank s