Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Hi my name is April. My family and I just recently realized there was a name for our " difference " . I feel quite ignorant, but I really thought we were the only ones with the trait. All I knew about it was that my dad and his dad and his grandpa had it. My brother and my sister have inherited it. All my life my family said that I could never have children and that bothered me a lot, but I'm happy to say I have a beautiful little girl Abigail she's five months old and has also inherited the trait. i would appreciate any and all information about BPES and about surgeries whether to have it done or not. Pros and Cons. We are form NC. I would really like to find a doctor close by that has atleast heard of BPES. Thanks, April Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 If you can make the trip a few hours north, Dr. Gavaris is an ocularplastic surgeon who is very familiar with BPES and the corrective eye surgeries. He is a very careful and caring person. --- apie2205 <apie2205@...> wrote: > Hi my name is April. My family and I just recently > realized there was > a name for our " difference " . I feel quite ignorant, > but I really > thought we were the only ones with the trait. All I > knew about it was > that my dad and his dad and his grandpa had it. My > brother and my > sister have inherited it. All my life my family said > that I could > never have children and that bothered me a lot, but > I'm happy to say I > have a beautiful little girl Abigail she's five > months old and has > also inherited the trait. i would appreciate any and > all information > about BPES and about surgeries whether to have it > done or not. Pros > and Cons. We are form NC. I would really like to > find a doctor close > by that has atleast heard of BPES. > Thanks, > April > > Best regards, Tony Borrego Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Hi all, I think there were a few people who posted regarding doctors in NC who knew about BPES? I live in NC and have BPES along with my 3 year old daughter. And April, don't feel bad about not knowing there was a name for our "difference" because I didn't realize I had BPES until a few days after my daughter was born and I realized her eyes were the same as mine. I searched online until I found this website! My corrective surgeries were performed in PA and that doctor has since retired. However, I am planning on having my daughter's corrective surgeries completed by J. Dutton, M.D., Ph.D., F.A.C.S, Professor of Ophthalmology at the UNC School of Medicine. He was referred to me through a friend whose former colleague from Duke is currently completing a fellowship under him. When I met with him, he explained everything to me until I understood exactly what her surgical plan would entail. He even copied the pages from the book he wrote that explains how to perform the operation. My daughter hasn't had her surgeries yet, so I don't have any "before and after" pictures but I am sure you could follow up with Dr. Dutton and he could provide you with some. You can view his credentials and get further information from the following website: http://www.med.unc.edu/ophth/bio_dutton.shtml. I hope this information is helpful to those of you in NC. I will be contacting Dr. Dutton for a follow up meeting soon as my daughter is approaching 4, which is the age she would have her first surgery. You can view our pictures under "Paige and ". blepharophimosis new to blepharophimosis Hi my name is April. My family and I just recently realized there was a name for our "difference" . I feel quite ignorant, but I really thought we were the only ones with the trait. All I knew about it was that my dad and his dad and his grandpa had it. My brother and my sister have inherited it. All my life my family said that I could never have children and that bothered me a lot, but I'm happy to say I have a beautiful little girl Abigail she's five months old and has also inherited the trait. i would appreciate any and all information about BPES and about surgeries whether to have it done or not. Pros and Cons. We are form NC. I would really like to find a doctor close by that has atleast heard of BPES.Thanks,April oneSearch: Finally, mobile search that gives answers, not web links. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2007 Report Share Posted June 11, 2007 Hi , I was just wondering if you could send me an email to apie2205@... because i wanted to know where you live in NC and I wasn't sure if you wanted to post it on this site. When is Paige having her surgery? How did you get the diagnoses? Have you had any issues with insurance. What kind of surgery did you have and how old were you? Sorry for all the questions, but I'm so happy to find other people like us and I want to find out all I can. Thanks, April > > Hi all, > I think there were a few people who posted regarding doctors in NC who knew about BPES? I live in NC and have BPES along with my 3 year old daughter. And April, don't feel bad about not knowing there was a name for our " difference " because I didn't realize I had BPES until a few days after my daughter was born and I realized her eyes were the same as mine. I searched online until I found this website! > > My corrective surgeries were performed in PA and that doctor has since retired. However, I am planning on having my daughter's corrective surgeries completed by J. Dutton, M.D., Ph.D., F.A.C.S, Professor of Ophthalmology at the UNC School of Medicine. He was referred to me through a friend whose former colleague from Duke is currently completing a fellowship under him. When I met with him, he explained everything to me until I understood exactly what her surgical plan would entail. He even copied the pages from the book he wrote that explains how to perform the operation. My daughter hasn't had her surgeries yet, so I don't have any " before and after " pictures but I am sure you could follow up with Dr. Dutton and he could provide you with some. You can view his credentials and get further information from the following website: http://www.med.unc.edu/ophth/bio_dutton.shtml. > > I hope this information is helpful to those of you in NC. I will be contacting Dr. Dutton for a follow up meeting soon as my daughter is approaching 4, which is the age she would have her first surgery. You can view our pictures under " Paige and " . > > > > blepharophimosis new to blepharophimosis > > Hi my name is April. My family and I just recently realized there was > a name for our " difference " . I feel quite ignorant, but I really > thought we were the only ones with the trait. All I knew about it was > that my dad and his dad and his grandpa had it. My brother and my > sister have inherited it. All my life my family said that I could > never have children and that bothered me a lot, but I'm happy to say I > have a beautiful little girl Abigail she's five months old and has > also inherited the trait. i would appreciate any and all information > about BPES and about surgeries whether to have it done or not. Pros > and Cons. We are form NC. I would really like to find a doctor close > by that has atleast heard of BPES. > Thanks, > April > > > > > > > _____________________________________________________________________ _______________ > Looking for a deal? Find great prices on flights and hotels with FareChase. > http://farechase./ > Quote Link to comment Share on other sites More sharing options...
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