Guest guest Posted June 19, 2006 Report Share Posted June 19, 2006 Hi Elodie Welcome to the group!! There are people here who can answer most questions it seems so I for one have found it very helpful. It must be a comforting feeling knowing that you are not alone in your syndrome; although I am very surprised you Doctors haven’t diagnosed it. With regard to fertility it depends on if you have type 1 or type 2 BPES. You can have a blood test done to determine this but it appears that for some reason the results take at least a year to come back. You should speak to your Doctor about getting some blood tests to check your hormone levels which will give you a better idea. However if fertility is a problem you do have the option of IVF with a donor egg. I won’t rant on anymore and bore you. Take care Bryony From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of labellemonalisa Sent: 18 June 2006 06:41 blepharophimosis Subject: blepharophimosis Nice to meet you ^^ Hi everybody! My name is Elodie, I'm French and I'm 22 years old.. A few days ago, I was searching for some informations about all my problems with my eyes. I've been operated twice, at 2 and 3 years old. And my parents always told me, it was because of a malformation. But as I told i made some researches on my own, and i found, this was not a malformation but a disease. There is no doubt possible, i have the BPES syndrome and it's so good to put a name on this thing ( i'm sorry my english is really bad).. Actually I'm a bit affraid, because i learnt i could have some problem of sterility, but this is not question about this in my life right now, so i stay calm.. I'm sorry, i'm realising i want to say many things in the same time so my post is really becoming disorganized... It is good to know i'm not alone ^^ I mean i've felt alone a big part of my childhood. i've got a lovely family and 2 beautiful sisters and no one had this probleme except me. When i went to school, i suppose everybody there know that... children were just awful with me T_T... By growing i realized that grow-ups could be really worst than children about this... This disease is just frustrating. I mean, i can't complain about my eyes, i'm quite lucky to have been operated, and i'm not uggly, and i'm not stupid thanks to the bpes, i think... But when people judge me because of my eyes, or when i have some remarks, well i suppose everybody here know that... Well it's just so painful, i'm so sensitive about this. So now i've said all my emotional things , i have some questions. But first of all, i'd like to thank the persons who had one day the idea of forming this group ^^ i 've told you my post would be disorganized >>>>>> Is there a large proportion of women with bpes, who have problem of sterility? >>>>>> even if i am sterile, is there a way to have a baby? ( i'm not talking about adoption >_<') >>>>>> should i go to a genetician? (= a doctor in genetic) >>>>>> are people pleased with their eyes? >>>>>> are non-operated people pleased with their eyes? >>>>>> how do operated eyes grow old? do they need other interventions? i'm not sure i asked all what i wanted to... but i think i'll be back ^^ I give you my msn messenger adress, if anybody wants to make me improve my english ^^ miss_crayonhotmail i'm really happy to have found this group ^^ have a nice day every one ^^ -- No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.9.0/368 - Release Date: 16/06/2006 -- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.394 / Virus Database: 268.9.0/368 - Release Date: 16/06/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 My 1yd old daughter has BPES and I just discovered this site tonight! I am so excited because this is our first connection to others with this issue - although I don't think I can offer much information I hope we can all help each other by just sharing experiences, fears and questions. Welcome. Right now our fears are the surgeries and the possible infertility. Also I'me glad to hear you think you are not ugly because of your eyes. Sincerly Holmes > > Hi everybody! > My name is Elodie, I'm French and I'm 22 years old.. > A few days ago, I was searching for some informations about all my > problems with my eyes. I've been operated twice, at 2 and 3 years old. > And my parents always told me, it was because of a malformation. But > as I told i made some researches on my own, and i found, this was not > a malformation but a disease. There is no doubt possible, i have the > BPES syndrome and it's so good to put a name on this thing ( i'm sorry > my english is really bad).. Actually I'm a bit affraid, because i > learnt i could have some problem of sterility, but this is not > question about this in my life right now, so i stay calm.. > I'm sorry, i'm realising i want to say many things in the same time so > my post is really becoming disorganized... > It is good to know i'm not alone ^^ > I mean i've felt alone a big part of my childhood. i've got a lovely > family and 2 beautiful sisters and no one had this probleme except me. > When i went to school, i suppose everybody there know that... children > were just awful with me T_T... > By growing i realized that grow-ups could be really worst than > children about this... > This disease is just frustrating. I mean, i can't complain about my > eyes, i'm quite lucky to have been operated, and i'm not uggly, and > i'm not stupid thanks to the bpes, i think... > But when people judge me because of my eyes, or when i have some > remarks, well i suppose everybody here know that... Well it's just so > painful, i'm so sensitive about this. > > So now i've said all my emotional things , i have some questions. > But first of all, i'd like to thank the persons who had one day the > idea of forming this group ^^ i 've told you my post would be disorganized > > >>>>>> Is there a large proportion of women with bpes, who have > problem of sterility? > >>>>>> even if i am sterile, is there a way to have a baby? ( i'm not > talking about adoption >_<') > >>>>>> should i go to a genetician? (= a doctor in genetic) > >>>>>> are people pleased with their eyes? > >>>>>> are non-operated people pleased with their eyes? > >>>>>> how do operated eyes grow old? do they need other interventions? > > i'm not sure i asked all what i wanted to... but i think i'll be back ^^ > > I give you my msn messenger adress, if anybody wants to make me > improve my english ^^ > miss_crayon@... > > i'm really happy to have found this group ^^ > have a nice day every one ^^ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Hello Elodie, welcome to the group! You will find a lot of friendly helpful people here. I also was very happy to find this group about 5 years ago - I thought I was the only one in the world with BPES!! I have one daughter 19yrs old with BPES. Yes it would be a good idea to see your doctor about having your fertility monitored - it just a blood test. Our daughter also going through the process of learning about possible fertility problems later, but there seems to be a few options out there these days. Hope we hear more from you....... Maree (NZ) > > Hi everybody! > My name is Elodie, I'm French and I'm 22 years old.. > A few days ago, I was searching for some informations about all my > problems with my eyes. I've been operated twice, at 2 and 3 years old. > And my parents always told me, it was because of a malformation. But > as I told i made some researches on my own, and i found, this was not > a malformation but a disease. There is no doubt possible, i have the > BPES syndrome and it's so good to put a name on this thing ( i'm sorry > my english is really bad).. Actually I'm a bit affraid, because i > learnt i could have some problem of sterility, but this is not > question about this in my life right now, so i stay calm.. > I'm sorry, i'm realising i want to say many things in the same time so > my post is really becoming disorganized... > It is good to know i'm not alone ^^ > I mean i've felt alone a big part of my childhood. i've got a lovely > family and 2 beautiful sisters and no one had this probleme except me. > When i went to school, i suppose everybody there know that... children > were just awful with me T_T... > By growing i realized that grow-ups could be really worst than > children about this... > This disease is just frustrating. I mean, i can't complain about my > eyes, i'm quite lucky to have been operated, and i'm not uggly, and > i'm not stupid thanks to the bpes, i think... > But when people judge me because of my eyes, or when i have some > remarks, well i suppose everybody here know that... Well it's just so > painful, i'm so sensitive about this. > > So now i've said all my emotional things , i have some questions. > But first of all, i'd like to thank the persons who had one day the > idea of forming this group ^^ i 've told you my post would be disorganized > > >>>>>> Is there a large proportion of women with bpes, who have > problem of sterility? > >>>>>> even if i am sterile, is there a way to have a baby? ( i'm not > talking about adoption >_<') > >>>>>> should i go to a genetician? (= a doctor in genetic) > >>>>>> are people pleased with their eyes? > >>>>>> are non-operated people pleased with their eyes? > >>>>>> how do operated eyes grow old? do they need other interventions? > > i'm not sure i asked all what i wanted to... but i think i'll be back ^^ > > I give you my msn messenger adress, if anybody wants to make me > improve my english ^^ > miss_crayon@... > > i'm really happy to have found this group ^^ > have a nice day every one ^^ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Welcome Kimberley Your daughter is certainly not on her own, this site is amazing, a support and wealth of information for you and your daughter. I am Clare, my wonderful daughter is Emy (age 10), Ihave BPES and so does she. She is the most amazing confident happy girl. Living with BPES is not so much of an issue as long as you get the right grounding and information - you will find those things here.. Welcome to all of you who have just joined. Lets keep talking.... Would love to hear more about your family. Clare - Herts UK <kimholmes2005@...> wrote: My 1yd old daughter has BPES and I just discovered this site tonight! I am so excited because this is our first connection to others with this issue - although I don't think I can offer much information I hope we can all help each other by just sharing experiences, fears and questions. Welcome. Right now our fears are the surgeries and the possible infertility. Also I'me glad to hear you think you are not ugly because of your eyes.Sincerly Holmes>> Hi everybody!> My name is Elodie, I'm French and I'm 22 years old..> A few days ago, I was searching for some informations about all my> problems with my eyes. I've been operated twice, at 2 and 3 years old.> And my parents always told me, it was because of a malformation. But> as I told i made some researches on my own, and i found, this was not> a malformation but a disease. There is no doubt possible, i have the> BPES syndrome and it's so good to put a name on this thing ( i'm sorry> my english is really bad).. Actually I'm a bit affraid, because i> learnt i could have some problem of sterility, but this is not> question about this in my life right now, so i stay calm..> I'm sorry, i'm realising i want to say many things in the same time so> my post is really becoming disorganized...> It is good to know i'm not alone ^^> I mean i've felt alone a big part of my childhood. i've got a lovely> family and 2 beautiful sisters and no one had this probleme except me.> When i went to school, i suppose everybody there know that... children> were just awful with me T_T...> By growing i realized that grow-ups could be really worst than> children about this...> This disease is just frustrating. I mean, i can't complain about my> eyes, i'm quite lucky to have been operated, and i'm not uggly, and> i'm not stupid thanks to the bpes, i think...> But when people judge me because of my eyes, or when i have some> remarks, well i suppose everybody here know that... Well it's just so> painful, i'm so sensitive about this. > > So now i've said all my emotional things , i have some questions.> But first of all, i'd like to thank the persons who had one day the> idea of forming this group ^^ i 've told you my post would be disorganized> > >>>>>> Is there a large proportion of women with bpes, who have> problem of sterility?> >>>>>> even if i am sterile, is there a way to have a baby? ( i'm not> talking about adoption >_<')> >>>>>> should i go to a genetician? (= a doctor in genetic)> >>>>>> are people pleased with their eyes?> >>>>>> are non-operated people pleased with their eyes?> >>>>>> how do operated eyes grow old? do they need other interventions?> > i'm not sure i asked all what i wanted to... but i think i'll be back ^^> > I give you my msn messenger adress, if anybody wants to make me> improve my english ^^> miss_crayon@...> > i'm really happy to have found this group ^^> have a nice day every one ^^> Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
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