Guest guest Posted November 10, 2001 Report Share Posted November 10, 2001 Dear Noonnaa e.a. Lynne Schauble has a network. She can perhaps help you find people in your area: BPEI Family Network 820 SE Meadow Vale Drive Pullman, WA 99163 Lschauble@... (509)332-6628 It is indeed remarkable that there are many new members with little kids in such short time! Hurray for internet! Last time in the waiting room at the hospital we met another mom with her son Maarten (3 years old) with BPES/BPEI (?). I must say that this was wonderful. It is very nice to meet people in real life, next to this group (which is also wonderful, but diffrent). Maarten's mom had once met another mom with BPES kid just in the supermarket (can you believe it!) and this had been a great help for her as well. Maarten will be operated on for the first time soon, as he turns 4 years old. Via my midwife I am also in contact (over the telephone) with again another dutch mom with a girl with BPES whom is 7 years old now and has not been operated. Dont think both mom's will search the internet so I will keep you all informed on our experiences. Can we conclude that it isn't such a rare disorder?? And Noonnaa it seems that you can perhaps find other affected people via midwifes or hospitals... Good luck, Bernice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2002 Report Share Posted April 20, 2002 I am the mother of a 7 years old girl and a 5 years old boy who have ( like their father, grand- father and aunt) a blepharophimosis. I have just learn that there are consequences about infertility. I am very sad about that and I need some help. Who could share his experience with me? My english is not good - i'm French- but I can read it. Thanks, Francoise Francoise.LACROIX-SEIGNAN@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2003 Report Share Posted June 5, 2003 This message of mine didn't appear on the board so i'm forwarding it so ppl can read. Note: forwarded message attached. Mobile - Check compose your email via SMS on your Telstra or Vodafone mobile. Hi , So wonderful to hear from you. I am so happy that i am a source of encouragement to you. I am the one pictured on the left (with the white veil on, it was a henz night, fifty girls all on the town partying.. a wild night to say the least lol). I am very excited that you are the first person to tell me of a single female who was able to conceive. I am definitely getting to the age where i can't stop thinking about wanting to have children. Its difficult when you know you have so much love to give and would be a fabulous parent. I live in my boyfriend (who is also my business partner), we are financially secure and excited about our future. I am sad about the prospect, he is an only child, with unbelievable genes (i'm not being biaised, he is actually is a straight A student, going to harvard next year, who also set up his own business when he was 17 that is very successful - and is funny and charming.. ) so i definitely feel a bit of pressure to be able to have his child. He knows about the infertility aspect and has been wonderfully supportive.. (his mother does not and i cringe at the thought of her knowing, she is hanging out for us to get married and give her grandchildren who will hopefully be geniuses like her son). I have a gut feeling that i wont be able to have children, although my periods are relatively normal now, i didn't start them until i was 16. I am determined to have children one or another though. I am doing research into surrogacy and/or egg donorship (if thats a possibility). I would involve my sister in that, however she is 32 already and just found she is infertile (she doesn't have bpei). But anyway, what can i say, life is always interesting for me.. and i enjoy challenges i know i will overcome :-) Regarding your daughter, i am sure she will be fine.. expect her to get some comments and prepare her. Make her understand that all kids are different in unique ways. Find out what her skills are and really help her focus on her strengths so she can be great at something to give her confidence. I remember telling my mum about some of the rude comments kids would say (although mostly i wouldn't because i was too embarassed to admit it ) ..and she would swiftly turn the conversation around and focus my talents in dancing.. and say ' well mrs turner says she wishes her daughters could dance like you.. you are very lucky to be so talented kirsty' .. (mrs turner probably said nothing of the sort lol but nevertheless my mum did the right thing). and soon i would forget my small eyes and be proud that my mother was complimenting me. Some of the comments i had as a child were:- "Pop eye:" "one-eyed willy" "is she blind" "crazy eyed girl" etc etc - as you can see not exactly the wittyiest array of comments but all the same, enough to hurt my feelings. These were the comments said to my face.. not sure about the ones behind my back.. Yes they hurt, and at the time i was convinced i was the only person who was ever teased about something If i had a chance to retort now i would take the approach where they being ridiculous.. "what is the big deal? so my eyes are a bit smaller than normal, my vision is fine, i'd rather have that problem than be completely rude and nasty... get over yourself" I say the above comment because comments like "god loves all his creatures even the ones with small eyes etc" . just wont fly in the schoolyard with the bully kids.. it will only make matters worse. Kids need to be strong and confident. I was by no means tough, i was just confident in my strengths so i knew i had the right to stand up for myself. Its inevitable there will be comments from the kids,- but home schooling (in my opinion) is almost detrimental. She needs more than ever to feel normal and accepted (like you arn't ashamed). My parents were great with that - in fact, i got NO special treatment, if i was naughty or played up my parents let me know that i as smart enough to know better - and they were right. Both my brother and sister were involved in just about every activtiy/sport you can imagine, musical instruments, dancing, sport - and if my parents had my exceptions for me to not be involved, i would have really felt 'different'.. - instead they signed me up and involved me in just about every activity. Son i was known as an all-rounder, some of the things i sucked at completely lol, but the main thing is i had a go at it, and everybody knew me as someone who was willing to try anything! and that gave me confidence and a lot of friends. I hope some of this helps.. i would be happy to be a source of support for you and your daughter through the coming years. I run my business on the internet so i'm always online and can always offer advice support - i can even talk to your daughter when she gets older if you would like. Same goes to anybodyelse reading this long-winded post (hopefully i didn't bore you and you made it down this far lol) Take care Kirsty Rozrabbit@... wrote: Hi Kirsty,I just wanted to let you know that it is great to hear from you. My daughter is 4 yrs old and has Bleph. She is a beautiful and happy girl, but we were not always sure this would be the case. In the beginning we went to some ignorant doctors who said she would never look "normal" we then went to see Dr. Katowitz in Philadelphia who gave us hope. He did her surgery at 4 months and then another one at 2 yrs old. I saw the picture of you and you are so beautiful! My hopes are so lifted by this, are you the girl when looking at the picture on the left or vice versa?? Either way you are both beautiful girls. I wish I could help you regarding the infertility problems, unfortunately we are just starting our journey and have many years to go before we have to deal with the issue of infertility all though I have thought many times about the fact that Aurora (our daughter) may never be able to have children. I have talked with a few women who have Bleph. and it seems like they do not have a normal menstrual cycle and also are on hormones. so the fact that you have a normal menstrual cycle is a good thing I would think. There was another girl from Canada who posted to the group a couple of years ago regarding issues of infertility, Her and her husband were trying to conceive and were not able to. I am not sure how things turned out for them, but when I E-mailed them it took them at least 9 months to write back. But I will try to find their e-mail address and ask them how they made out. And one other thing, I think it is definitely possible for a women with Bleph. to conceive, there was a woman who had it who had a son who also had it then he had a son who had it too. But if I remember correctly she also had children who weren't affected. Its all very confusing, I had all of these e-mails saved but I had to have my hard drive replaced and lost everything. Anyway, thanks again for giving me hope that my daughter will have a happy normal life. I am concerned for her when she goes to school that she will be ridiculed. I thought of home schooling her but do not think this is the answer. She is a strong little girl and I think she will be OK sometimes I think I will have more of a problem then she will. Take care, Mobile - Check compose your email via SMS on your Telstra or Vodafone mobile. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Hi Welcome to the group. It sounds like you have not been getting the information and medical attention that you need for . I think that the best thing you can do is to ask your GP to refer you to a Geneticist as soon as possible. You can say to the GP that you have heard it said that may have BPES. The main thing is that you get the right diagnosis, and a suitable treatment plan. This may involve being referred to Moorfields Eye Hospital (although I am sure that there are good hospitals in Southampton). There are a few families in the Portsmouth and Southampton area who have a child with BPES – I am sure that one of them will be in touch with you very soon. They may be able to tell you more about who they have seen. Take care Shireen Mohandes London, England From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of rachael.grace Sent: 27 July 2008 20:42 blepharophimosis Subject: blepharophimosis blepharophimosis Hello my name is rachael and im from southampton england,my son daniel is now 5, his eyes were very small infact tiny when he was born and everybody always said he looked tired. When he was 1 years old my doctor at the time thought he had downsyndrom and i was sent to the hospital with him for all sorts of tests, they took pictures of his eyes ,checked the width of his bridge of his nose etc...they said there was nothing wrong with him ,but he may need alittle surgery later on his eyes...eveything was very vague...but i was never told of this Blepharophimosis...in the last 5 years we have been approached twice by 2 different families asking about our sons condition as there child had blepharophimosis...at the time we just put it too one side, up until last week while on holiday in alcudia a lovely lady called Theresa approached us amazed that there was another child she could meet face to face with the same condition as her daughter..we got talking and she told me about this support group...please help me i have no idea about this at all and no body has told me how i can help my son..he still has not had any operation...i just want him to have the same chances as everybody else in life. we just want to help him...i hope you caN HELP ME ..THANKYOU...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 welcome to the group. It is a great place and so wonderful to finally find out a " name " for the condition and then to find so many other wonderful people who really understand where you are at. Our son Todd is 6 and wasn't diagnosed for a while either. but since finding this group I feel so much more empowered and understood. I hope you and can find some of the answers you are looking for. Best Wishes Caroline Ashford, Kent, UK > > Hello my name is rachael and im from southampton england,my son daniel > is now 5, his eyes were very small infact tiny when he was born and > everybody always said he looked tired. When he was 1 years old my > doctor at the time thought he had downsyndrom and i was sent to the > hospital with him for all sorts of tests, they took pictures of his > eyes ,checked the width of his bridge of his nose etc...they said there > was nothing wrong with him ,but he may need alittle surgery later on > his eyes...eveything was very vague...but i was never told of this > Blepharophimosis...in the last 5 years we have been approached twice by > 2 different families asking about our sons condition as there child had > blepharophimosis...at the time we just put it too one side, up until > last week while on holiday in alcudia a lovely lady called Theresa > approached us amazed that there was another child she could meet face > to face with the same condition as her daughter..we got talking and she > told me about this support group...please help me i have no idea about > this at all and no body has told me how i can help my son..he still has > not had any operation...i just want him to have the same chances as > everybody else in life. we just want to help him...i hope you caN HELP > ME ..THANKYOU...... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2008 Report Share Posted July 28, 2008 Hi Caroline WOW it was nice to read your message and even nicer to find Someone as close to and I with the same condition, nice to meet you, > > From: " Caroline Obbard " <cazobbs@...> > Date: 2008/07/28 Mon AM 09:43:41 BST > blepharophimosis > Subject: blepharophimosis Re: blepharophimosis > > > welcome to the group. It is a great place and so wonderful to > finally find out a " name " for the condition and then to find so many > other wonderful people who really understand where you are at. > Our son Todd is 6 and wasn't diagnosed for a while either. but since > finding this group I feel so much more empowered and understood. > I hope you and can find some of the answers you are looking > for. > Best Wishes > Caroline > Ashford, Kent, UK > > > > > > Hello my name is rachael and im from southampton england,my son > daniel > > is now 5, his eyes were very small infact tiny when he was born and > > everybody always said he looked tired. When he was 1 years old my > > doctor at the time thought he had downsyndrom and i was sent to the > > hospital with him for all sorts of tests, they took pictures of > his > > eyes ,checked the width of his bridge of his nose etc...they said > there > > was nothing wrong with him ,but he may need alittle surgery later > on > > his eyes...eveything was very vague...but i was never told of this > > Blepharophimosis...in the last 5 years we have been approached > twice by > > 2 different families asking about our sons condition as there child > had > > blepharophimosis...at the time we just put it too one side, up > until > > last week while on holiday in alcudia a lovely lady called Theresa > > approached us amazed that there was another child she could meet > face > > to face with the same condition as her daughter..we got talking and > she > > told me about this support group...please help me i have no idea > about > > this at all and no body has told me how i can help my son..he still > has > > not had any operation...i just want him to have the same chances as > > everybody else in life. we just want to help him...i hope you caN > HELP > > ME ..THANKYOU...... > > > > > > ----------------------------------------- Email sent from www.virginmedia.com/email Virus-checked using McAfee® Software and scanned for spam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 > > > > Hello my name is rachael and im from southampton england,my son > daniel > > is now 5, his eyes were very small infact tiny when he was born and > > everybody always said he looked tired. When he was 1 years old my > > doctor at the time thought he had downsyndrom and i was sent to the > > hospital with him for all sorts of tests, they took pictures of > his > > eyes ,checked the width of his bridge of his nose etc...they said > there > > was nothing wrong with him ,but he may need alittle surgery later > on > > his eyes...eveything was very vague...but i was never told of this > > Blepharophimosis...in the last 5 years we have been approached > twice by > > 2 different families asking about our sons condition as there child > had > > blepharophimosis...at the time we just put it too one side, up > until > > last week while on holiday in alcudia a lovely lady called Theresa > > approached us amazed that there was another child she could meet > face > > to face with the same condition as her daughter..we got talking and > she > > told me about this support group...please help me i have no idea > about > > this at all and no body has told me how i can help my son..he still > has > > not had any operation...i just want him to have the same chances as > > everybody else in life. we just want to help him...i hope you caN > HELP > > ME ..THANKYOU...... > > >hello caroline thankyou for replying, i have since taken daniel back to the doctors and we were amazed to find out that he was diagnosed with bleph at the age of 1....no one bothered to tell us or explain anything,can you believe it...anyway he was put under a plastic surgeon a year ago, but we had heard nothing....the doctor now is going to push it all ahead so hopefully we should have a hospital appointment soon...thankyou again...from rachael from southampton... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 Hi Dan and family So very happy to see your Message on group mail Its Therese & Esme here. We met you at the poolside in Alcudia Esme still talks about Dan and tells us that she loves him. Esme is due her operation with Collin at Moorfields Hospital this Thursday. We're shaking with nerves! Still covered in Mosquito bite scars but had a lovely holiday & hope you guys did too. please give Dan a hug from Esme Therese & Tom xx PS this is a message from Esme " Im going to give daniel a really big present that he likes i think he likes postman pat and im going to wrap it up with cellotape. I really really like you " love ESME XXXX In blepharophimosis , " rachael.grace " <rachael.grace@...> wrote: > > Hello my name is rachael and im from southampton england,my son daniel > is now 5, his eyes were very small infact tiny when he was born and > everybody always said he looked tired. When he was 1 years old my > doctor at the time thought he had downsyndrom and i was sent to the > hospital with him for all sorts of tests, they took pictures of his > eyes ,checked the width of his bridge of his nose etc...they said there > was nothing wrong with him ,but he may need alittle surgery later on > his eyes...eveything was very vague...but i was never told of this > Blepharophimosis...in the last 5 years we have been approached twice by > 2 different families asking about our sons condition as there child had > blepharophimosis...at the time we just put it too one side, up until > last week while on holiday in alcudia a lovely lady called Theresa > approached us amazed that there was another child she could meet face > to face with the same condition as her daughter..we got talking and she > told me about this support group...please help me i have no idea about > this at all and no body has told me how i can help my son..he still has > not had any operation...i just want him to have the same chances as > everybody else in life. we just want to help him...i hope you caN HELP > ME ..THANKYOU...... > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.