Guest guest Posted April 2, 2007 Report Share Posted April 2, 2007 My name is Janice, I'm 47 and I have 5 brothers and 2 sisters. The 4 oldest do not have blep but all of us 4 youngest do. I'm glad I accidently found this site. Do any of you find it hard some days to get out of bed?. I have had 3 surgeries and they have all went well, but I still even now know that some people look at me and then turn away because I still look different. Most of the time I can deal with everything but the really hard part is someone wanting to know why I don't have children when I love kids. Does anyone know if more research is being done of this condition? I'm the youngest of the family and we 4 are starting to have medical problems. I know this is long but if anyone has any answers I would love to know them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2007 Report Share Posted April 4, 2007 Dear Janice Welcome to the group. I know that some research is being completed now, and hopefully it will be published soon. I don’t know what the exact nature of it is, but I know that it is about BPES and POF. As soon as I have more information I will post it on this site. Where do you live Janice? I am from London, in England. I am the only person in my family with BPES. Quite a few members of this group are like you, in the sense that there are lots of people in their family with BPES. Take care Shireen From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of jlelpn03 Sent: 02 April 2007 08:06 blepharophimosis Subject: blepharophimosis Not alone, But My name is Janice, I'm 47 and I have 5 brothers and 2 sisters. The 4 oldest do not have blep but all of us 4 youngest do. I'm glad I accidently found this site. Do any of you find it hard some days to get out of bed?. I have had 3 surgeries and they have all went well, but I still even now know that some people look at me and then turn away because I still look different. Most of the time I can deal with everything but the really hard part is someone wanting to know why I don't have children when I love kids. Does anyone know if more research is being done of this condition? I'm the youngest of the family and we 4 are starting to have medical problems. I know this is long but if anyone has any answers I would love to know them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2007 Report Share Posted April 6, 2007 Hi Janice! Yep, we all feel like that sometimes and it can be really hard when you don't know all the answers. My baby Abbie has BPES plus development problems so I don't know what she'll be able to do as she grows up. But I hope you know that everyone on this site is here for each other so I'm really glad you've found it too. Our differences are what make us special and anyone who looks away from you doesn't deserve your concern, so try not to let it bother you (although I know that's easier said than done). Take care, Leah (Notts. UK) P.S Where are you from Janice? > > Dear Janice > > Welcome to the group. I know that some research is being completed now, and > hopefully it will be published soon. > > I don't know what the exact nature of it is, but I know that it is about > BPES and POF. > > As soon as I have more information I will post it on this site. > > Where do you live Janice? I am from London, in England. I am the only person > in my family with BPES. Quite a few members of this group are like you, in > the sense that there are lots of people in their family with BPES. > > Take care > > Shireen > > > > _____ > > From: blepharophimosis > [mailto:blepharophimosis ] On Behalf Of jlelpn03 > Sent: 02 April 2007 08:06 > blepharophimosis > Subject: blepharophimosis Not alone, But > > > > My name is Janice, I'm 47 and I have 5 brothers and 2 sisters. The 4 > oldest do not have blep but all of us 4 youngest do. I'm glad I > accidently found this site. Do any of you find it hard some days to > get out of bed?. I have had 3 surgeries and they have all went well, > but I still even now know that some people look at me and then turn > away because I still look different. Most of the time I can deal with > everything but the really hard part is someone wanting to know why I > don't have children when I love kids. Does anyone know if more > research is being done of this condition? I'm the youngest of the > family and we 4 are starting to have medical problems. I know this is > long but if anyone has any answers I would love to know them. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2007 Report Share Posted May 7, 2007 --- In blepharophimosis , " jlelpn03 " <jlelpn03@...> wrote: > > My name is Janice, I'm 47 and I have 5 brothers and 2 sisters. The 4 > oldest do not have blep but all of us 4 youngest do. I'm glad I > accidently found this site. Do any of you find it hard some days to > get out of bed?. I have had 3 surgeries and they have all went well, > but I still even now know that some people look at me and then turn > away because I still look different. Most of the time I can deal with > everything but the really hard part is someone wanting to know why I > don't have children when I love kids. Does anyone know if more > research is being done of this condition? I'm the youngest of the > family and we 4 are starting to have medical problems. I know this is > long but if anyone has any answers I would love to know them. > FIRST OF ALL YOUR NOT ALONE ............ I found this site when i was in my twentys and fought i was the only one in the world to have this . So i fully understand how you feel as i am sure everyone who reads this is .. I live in the uk and we have moorfields eye hosp , i have had 4 children and 3 out the 4 have bleph , my youngest just born one of a twin sadly we lost one and she has blep . Trust me , i know how you feel. If you wanna chat thats what we are here for . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2007 Report Share Posted May 11, 2007 Hi My daughter Holly is seen at Moorfields Eye Hospital, Mr Collin. Where do you live? We live in Gosport, near Portsmouth, Hampshire. Holly is the first in the family with BPES. Kind regards Lucybty690526 <scottfilbey@...> wrote: >> My name is Janice, I'm 47 and I have 5 brothers and 2 sisters. The 4 > oldest do not have blep but all of us 4 youngest do. I'm glad I > accidently found this site. Do any of you find it hard some days to > get out of bed?. I have had 3 surgeries and they have all went well, > but I still even now know that some people look at me and then turn > away because I still look different. Most of the time I can deal with > everything but the really hard part is someone wanting to know why I > don't have children when I love kids. Does anyone know if more > research is being done of this condition? I'm the youngest of the > family and we 4 are starting to have medical problems. I know this is > long but if anyone has any answers I would love to know them.>FIRST OF ALL YOUR NOT ALONE ............ I found this site when i was in my twentys and fought i was the only one in the world to have this . So i fully understand how you feel as i am sure everyone who reads this is .. I live in the uk and we have moorfields eye hosp , i have had 4 children and 3 out the 4 have bleph , my youngest just born one of a twin sadly we lost one and she has blep . Trust me , i know how you feel. If you wanna chat thats what we are here for . All New – Tired of unwanted email come-ons? Let our SpamGuard protect you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2007 Report Share Posted May 12, 2007 hi lucy i saw dr collins he did my operation lots of years ago and i am the first in the family as well to have this . i live in cornwall , i know you have lots of questions and i am only too happy too help please if you want to call me you may 07779120167 i hope i can help lucyLucy Chidgey <lcgosport@...> wrote: Hi My daughter Holly is seen at Moorfields Eye Hospital, Mr Collin. Where do you live? We live in Gosport, near Portsmouth, Hampshire. Holly is the first in the family with BPES. Kind regards Lucybty690526 <scottfilbeybtinternet> wrote: >> My name is Janice, I'm 47 and I have 5 brothers and 2 sisters. The 4 > oldest do not have blep but all of us 4 youngest do. I'm glad I > accidently found this site. Do any of you find it hard some days to > get out of bed?. I have had 3 surgeries and they have all went well, > but I still even now know that some people look at me and then turn > away because I still look different. Most of the time I can deal with > everything but the really hard part is someone wanting to know why I > don't have children when I love kids. Does anyone know if more > research is being done of this condition? I'm the youngest of the > family and we 4 are starting to have medical problems. I know this is > long but if anyone has any answers I would love to know them.>FIRST OF ALL YOUR NOT ALONE ............ I found this site when i was in my twentys and fought i was the only one in the world to have this . So i fully understand how you feel as i am sure everyone who reads this is .. I live in the uk and we have moorfields eye hosp , i have had 4 children and 3 out the 4 have bleph , my youngest just born one of a twin sadly we lost one and she has blep . Trust me , i know how you feel. If you wanna chat thats what we are here for . All New – Tired of unwanted email come-ons? Let our SpamGuard protect you. Thank you , Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2007 Report Share Posted May 13, 2007 Hi What a lovely part of the UK you live in!! Thank you very much for giving me your mobile number, it would definitely be great to ask you questions in the future but will let you settle with your new baby for now, I know what it is like. Take care and the very best Lucy (Hampshire, UK)SCOTT FILBEY <scottfilbey@...> wrote: hi lucy i saw dr collins he did my operation lots of years ago and i am the first in the family as well to have this . i live in cornwall , i know you have lots of questions and i am only too happy too help please if you want to call me you may 07779120167 i hope i can help lucyLucy Chidgey <lcgosport (DOT) co.uk> wrote: Hi My daughter Holly is seen at Moorfields Eye Hospital, Mr Collin. Where do you live? We live in Gosport, near Portsmouth, Hampshire. Holly is the first in the family with BPES. Kind regards Lucybty690526 <scottfilbeybtinternet> wrote: >> My name is Janice, I'm 47 and I have 5 brothers and 2 sisters. The 4 > oldest do not have blep but all of us 4 youngest do. I'm glad I > accidently found this site. Do any of you find it hard some days to > get out of bed?. I have had 3 surgeries and they have all went well, > but I still even now know that some people look at me and then turn > away because I still look different. Most of the time I can deal with > everything but the really hard part is someone wanting to know why I > don't have children when I love kids. Does anyone know if more > research is being done of this condition? I'm the youngest of the > family and we 4 are starting to have medical problems. I know this is > long but if anyone has any answers I would love to know them.>FIRST OF ALL YOUR NOT ALONE ............ I found this site when i was in my twentys and fought i was the only one in the world to have this . So i fully understand how you feel as i am sure everyone who reads this is .. I live in the uk and we have moorfields eye hosp , i have had 4 children and 3 out the 4 have bleph , my youngest just born one of a twin sadly we lost one and she has blep . Trust me , i know how you feel. If you wanna chat thats what we are here for . All New – Tired of unwanted email come-ons? Let our SpamGuard protect you. Thank you , is the world's favourite email. Don't settle for less, sign up for your free account today. Quote Link to comment Share on other sites More sharing options...
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