Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Hi Jane You may find this source of information useful: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html regards Shireen -----Original Message-----From: mirmilmar [mailto:CSpies@...]Sent: 12 September 2004 05:45blepharophimosis Subject: blepharophimosis Daughter has BPESHi everyone.We live in Florida (US) . My daughter, Marissa is 2 1/2 years old and has BPES. She is doing great but will likely need surgery in the next year.I have a couple of questions. What is the best place in the US for evaluation and treatment of BPES regarding surgeries and evaluation for molecular genetic testing. Names of physicians would be extremely helpful. We are willing to travel anywhere.Neither my husband nor I have BPES and we believe that my daughter having BPES was likely a de novo mutation. What are people's thoughts on genetic testing and where is the best place to have this completed?Thanks a lot.Jane Spies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2004 Report Share Posted September 19, 2004 hi jane...where in florida do you live? we live the atlanta area but travel to florida a few times a year...in fact we are going to be there this weekend in the melbourne area if you want to try and meet up...i just emailed another family in florida...so maybe your two families can meet up even if we cannot! take care...debbie -----Original Message-----From: mirmilmar [mailto:CSpies@...]Sent: 12 September 2004 05:45blepharophimosis Subject: blepharophimosis Daughter has BPESHi everyone.We live in Florida (US) . My daughter, Marissa is 2 1/2 years old and has BPES. She is doing great but will likely need surgery in the next year.I have a couple of questions. What is the best place in the US for evaluation and treatment of BPES regarding surgeries and evaluation for molecular genetic testing. Names of physicians would be extremely helpful. We are willing to travel anywhere.Neither my husband nor I have BPES and we believe that my daughter having BPES was likely a de novo mutation. What are people's thoughts on genetic testing and where is the best place to have this completed?Thanks a lot.Jane Spies Quote Link to comment Share on other sites More sharing options...
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