Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 Pinar, our hearts go out to you. The not knowing is very hard, it is good that you now have a font of information at your finger tips. I can only speak from our experience, our son is the only one in our family with BPES, this condition has never held him back from doing anything. Best wishes for the future! The Barrow Family Emalee Barrow From: pinarsanri <pinarsanri@...>Subject: blepharophimosis new memberblepharophimosis Date: Monday, February 23, 2009, 5:50 AM Hi,I am a new member of this group from Turkey.Last week we have learned that my 4 month old son is bleph.I am trying to read your messages and looking at pictures in order to understand the situation.He is the one and only in our family with this syndrome.I have an older son(5,5 yrs. old with big green eyes:(( )We have been to dr.s since he was 6 days old but noone could say anything about his eyes.There was obviously something wrong but they couln't diagonise. I think it's a rare condition.I was really bad for this past week but I should be strong and should be happy that it will only affect how he looks.He is really a happy(always smiling) baby and I can see he is really smart.I wish I can learn more at this group.PINAR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 > > From: pinarsanri <pinarsanri@...> > Subject: blepharophimosis new member > blepharophimosis > Date: Monday, February 23, 2009, 5:50 AM > > > > > > > Hi, > I am a new member of this group from Turkey.Last week we have learned > that my 4 month old son is bleph.I am trying to read your messages and > looking at pictures in order to understand the situation.He is the one > and only in our family with this syndrome.I have an older son(5,5 yrs. > old with big green eyes:(( ) > > We have been to dr.s since he was 6 days old but noone could say > anything about his eyes.There was obviously something wrong but they > couln't diagonise. I think it's a rare condition. > > I was really bad for this past week but I should be strong and should > be happy that it will only affect how he looks.He is really a happy > (always smiling) baby and I can see he is really smart. > > I wish I can learn more at this group. > > PINAR > Dear Pinar My heart goes out to you - I am the same; my son was born with Bleph yet my two other children have no problems. It was 10 months before the doctors decided anything was wrong. It is hard. It is a shock. But it will be ok. My son is now 2.5 and happy and handsome and everyone in our village, everyone who meets him fall in love with him! I wish you the best. Leonie (Crete, Greece) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2009 Report Share Posted February 26, 2009 Pinar, My family was in the same situation. Our daughter Avery is the first in our family. We took her to doctors as early as 2 weeks. Every one told us it could just be normal. I finally spoke with another doctor that referred me to a specialist at Riley Hospital in Indianapolis. Once I spoke with Dr. Plager my heart was settled and I realized that Avery was a healthy child and that we were blessed. Now we don’t even pay attention to the BPES. I will try to post some recent photos soon. Nicki Venable From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of cretemum Sent: Wednesday, February 25, 2009 5:29 PM To: blepharophimosis Subject: blepharophimosis Re: new member > > From: pinarsanri <pinarsanri@...> > Subject: blepharophimosis new member > blepharophimosis > Date: Monday, February 23, 2009, 5:50 AM > > > > > > > Hi, > I am a new member of this group from Turkey.Last week we have learned > that my 4 month old son is bleph.I am trying to read your messages and > looking at pictures in order to understand the situation.He is the one > and only in our family with this syndrome.I have an older son(5,5 yrs. > old with big green eyes:(( ) > > We have been to dr.s since he was 6 days old but noone could say > anything about his eyes.There was obviously something wrong but they > couln't diagonise. I think it's a rare condition. > > I was really bad for this past week but I should be strong and should > be happy that it will only affect how he looks.He is really a happy > (always smiling) baby and I can see he is really smart. > > I wish I can learn more at this group. > > PINAR > Dear Pinar My heart goes out to you - I am the same; my son was born with Bleph yet my two other children have no problems. It was 10 months before the doctors decided anything was wrong. It is hard. It is a shock. But it will be ok. My son is now 2.5 and happy and handsome and everyone in our village, everyone who meets him fall in love with him! I wish you the best. Leonie (Crete, Greece) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Dear Nicki, Thank you very much for your supportive mail.I looked at Avery's pictures and I think you are so lucky that the result seems fantastic.Are there any recent pictures that I can see?Also I want to ask if her eyelids close when she is sleeping or not. Thank you again. Best regards PINAR From: Nicki Venable <nicki.venable@...>blepharophimosis Sent: Thursday, February 26, 2009 3:27:42 PMSubject: RE: blepharophimosis Re: new member Pinar, My family was in the same situation. Our daughter Avery is the first in our family. We took her to doctors as early as 2 weeks. Every one told us it could just be normal. I finally spoke with another doctor that referred me to a specialist at Riley Hospital in Indianapolis . Once I spoke with Dr. Plager my heart was settled and I realized that Avery was a healthy child and that we were blessed. Now we don’t even pay attention to the BPES. I will try to post some recent photos soon. Nicki Venable From: blepharophimosis [mailto:blepharophi mosis@group s.com] On Behalf Of cretemumSent: Wednesday, February 25, 2009 5:29 PMblepharophimosisSubject: blepharophimosis Re: new member > > From: pinarsanri <pinarsanri@ ...>> Subject: blepharophimosis new member> blepharophimosis> Date: Monday, February 23, 2009, 5:50 AM> > > > > > > Hi,> I am a new member of this group from Turkey.Last week we have learned > that my 4 month old son is bleph.I am trying to read your messages and > looking at pictures in order to understand the situation.He is the one > and only in our family with this syndrome.I have an older son(5,5 yrs. > old with big green eyes:(( )> > We have been to dr.s since he was 6 days old but noone could say > anything about his eyes.There was obviously something wrong but they > couln't diagonise. I think it's a rare condition.> > I was really bad for this past week but I should be strong and should > be happy that it will only affect how he looks.He is really a happy> (always smiling) baby and I can see he is really smart.> > I wish I can learn more at this group.> > PINAR>Dear PinarMy heart goes out to you - I am the same; my son was born with Bleph yet my two other children have no problems. It was 10 months before the doctors decided anything was wrong.It is hard. It is a shock. But it will be ok. My son is now 2.5 and happy and handsome and everyone in our village, everyone who meets him fall in love with him!I wish you the best.Leonie ( Crete , Greece ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Pinar, Avery closes her eyes at night. I will be posting some recent photo this week. The results were fantastic. Following her surgery she was her normal self within about 1 hour. She seemed as if nothing happen that day! Nicki ________________________________ From: blepharophimosis on behalf of PINAR SANRI Sent: Sun 3/1/2009 3:42 PM blepharophimosis Subject: Re: blepharophimosis Re: new member Dear Nicki, Thank you very much for your supportive mail.I looked at Avery's pictures and I think you are so lucky that the result seems fantastic.Are there any recent pictures that I can see?Also I want to ask if her eyelids close when she is sleeping or not. Thank you again. Best regards PINAR ________________________________ From: Nicki Venable <nicki.venable@...> blepharophimosis Sent: Thursday, February 26, 2009 3:27:42 PM Subject: RE: blepharophimosis Re: new member Pinar, My family was in the same situation. Our daughter Avery is the first in our family. We took her to doctors as early as 2 weeks. Every one told us it could just be normal. I finally spoke with another doctor that referred me to a specialist at Riley Hospital in Indianapolis . Once I spoke with Dr. Plager my heart was settled and I realized that Avery was a healthy child and that we were blessed. Now we don't even pay attention to the BPES. I will try to post some recent photos soon. Nicki Venable ________________________________ From: blepharophimosis [mailto:blepharophi mosis@group s.com <http://s.com/> ] On Behalf Of cretemum Sent: Wednesday, February 25, 2009 5:29 PM blepharophimosis Subject: blepharophimosis Re: new member > > From: pinarsanri <pinarsanri@ ...> > Subject: blepharophimosis new member > blepharophimosis <mailto:blepharophimosis%40> > Date: Monday, February 23, 2009, 5:50 AM > > > > > > > Hi, > I am a new member of this group from Turkey.Last week we have learned > that my 4 month old son is bleph.I am trying to read your messages and > looking at pictures in order to understand the situation.He is the one > and only in our family with this syndrome.I have an older son(5,5 yrs. > old with big green eyes:(( ) > > We have been to dr.s since he was 6 days old but noone could say > anything about his eyes.There was obviously something wrong but they > couln't diagonise. I think it's a rare condition. > > I was really bad for this past week but I should be strong and should > be happy that it will only affect how he looks.He is really a happy > (always smiling) baby and I can see he is really smart. > > I wish I can learn more at this group. > > PINAR > Dear Pinar My heart goes out to you - I am the same; my son was born with Bleph yet my two other children have no problems. It was 10 months before the doctors decided anything was wrong. It is hard. It is a shock. But it will be ok. My son is now 2.5 and happy and handsome and everyone in our village, everyone who meets him fall in love with him! I wish you the best. Leonie ( Crete , Greece ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2010 Report Share Posted February 23, 2010 Hey Ruby! Welcome to the clan. We are glad to have you here. Shari Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2010 Report Share Posted February 23, 2010 Hi Ruby and welcome! Herbologist? Great!!! Guido where have you been my darling? I have missed you! Gayla Bob and Gayla Always Enough RanchAcampo CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2010 Report Share Posted July 7, 2010 > > I am suprised to find this EGroup Considering there are only 3 > members > including myself I guess it shows how rare this syndrome is? I am 16 > years old and was born with this and it is effecting me now in my > teen years with the infertitily aspect (No I am not talking about > pregnacies Lol)But in the normal growth and all. I would really like > to Chat with someone who can understand this. I have started going to > the Doctors again and will probably be taking some medication > soon..It > is very confusing and I feel rather alone I would love to Chat. Thank > You,Truly, > > hello i'm also 16 with bpes! tell me if you want a chat or anything xx Quote Link to comment Share on other sites More sharing options...
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