Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Hi Ally, welcome to this amazing group. You will find all sorts of things about people with BPES here. Im 37 with 3 kids - ranging from 14, 10 and 8 and I certainly have my hands full. Im Clare and my daughter Emy (10) have BPES no other person in my family. Any questions, thoughts or comments, feel free its excellent to talk. When you said you cried I remembered the way I felt when I found this group it was amazing, to think there is a whole world waiting to be discovered..... welcome and look forward to hearing from you soon. clare and emy herts, UK allygirl1967 <kaldi@...> wrote: Wow, l don't really know where to start,finding this support group is a real blessing.l'm a 38 year old mum with 4 children,l myself have blepharophimosis as do 2 of my children,my 16 year old son and my 7 year old son.No one else in my family has this condition,I'm the eldest of six children and have 10 neices and nephews.After looking at the photo's on this site I began to cry,it was like looking through my own photo's.What beautiful children we have.I look forward to hearing from you as I know now we are not the only ones with this condition.I live on the Gold coast in Queensland,Australia and would love to catch up with any one living up here.Ally. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Hi Ally, 'ullo, g'day, etc. There are some folks with BPES who live in Brisbane, but I no longer have their details, and none seem to be in this group, according to the database at least. (There's a database of sorts on the site that lists peoples' locations.) But there are some of us in Sinny and Melb'n, plus Parkes, Adelaide and a few other sundry Oz locations. Can't recall any others in the Cold Ghost, though. Anyhoo, if you're ever down our way look us up and we can maybe have a chat. Rob W Syd-er-ney allygirl1967 wrote: > Wow, l don't really know where to start,finding this support group is > a real blessing.l'm a 38 year old mum with 4 children,l myself have > blepharophimosis as do 2 of my children,my 16 year old son and my 7 > year old son.No one else in my family has this condition,I'm the > eldest of six children and have 10 neices and nephews.After looking at > the photo's on this site I began to cry,it was like looking through my > own photo's.What beautiful children we have.I look forward to hearing > from you as I know now we are not the only ones with this condition.I > live on the Gold coast in Queensland,Australia and would love to catch > up with any one living up here.Ally. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Thanks for your e-mail, it's great to know that we are not alone,and being able to chat to someone who knows about bleph.We have only been in Queensland for a year,moved up here from Mornington,.Do you have any children with bleph? My two boys had their opps at The Royal Childrens Hospital in Melbourne. look forward to hearing from you. Ally. Re: blepharophimosis Hi ,new member. Hi Ally,'ullo, g'day, etc.There are some folks with BPES who live in Brisbane, but I no longer have their details, and none seem to be in this group, according to the database at least. (There's a database of sorts on the site that lists peoples' locations.) But there are some of us in Sinny and Melb'n, plus Parkes, Adelaide and a few other sundry Oz locations. Can't recall any others in the Cold Ghost, though.Anyhoo, if you're ever down our way look us up and we can maybe have a chat.Rob WSyd-er-neyallygirl1967 wrote:> Wow, l don't really know where to start,finding this support group is > a real blessing.l'm a 38 year old mum with 4 children,l myself have > blepharophimosis as do 2 of my children,my 16 year old son and my 7 > year old son.No one else in my family has this condition,I'm the > eldest of six children and have 10 neices and nephews.After looking at > the photo's on this site I began to cry,it was like looking through my > own photo's.What beautiful children we have.I look forward to hearing > from you as I know now we are not the only ones with this condition.I > live on the Gold coast in Queensland,Australia and would love to catch > up with any one living up here.Ally. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Hi Clare and Emy, Thank you for your e-mail,it's so great to hear from someone else dealing with bleph.I would love to hear more about Emy and how you have all coped.All my life no one until finding this sight has ever seen bleph.Since posting my e-mail I have had so many lovely messages like your one and I feel so emotionally touched and excited,I no longer feel alone in this world,it's like finding family that I never knew I had.I grew up in Mornington 1hr's drive from Melbourne,,Australia. My 2 boys have had opps at the Royal Children's Hospital in Melbourne,where we meet up with the head of the Genetics department,he was able to show us pictures in a book that was so old of a couple of people with bleph,he also told us that bleph has a 50/50 chance of passing this conditionn on to their children.Unlike what my Doctor told me when I was growing up.Seeing these beautiful photo's on this fantastic site has touch all our hearts,I will be puting an album together soon and would love to see your photos.Thank you again for your e-mail.I look forward to hearing from you again and learning more about your little girl Emy. Regards Ally,, & Family. Re: blepharophimosis Hi ,new member. Hi Ally, welcome to this amazing group. You will find all sorts of things about people with BPES here. Im 37 with 3 kids - ranging from 14, 10 and 8 and I certainly have my hands full. Im Clare and my daughter Emy (10) have BPES no other person in my family. Any questions, thoughts or comments, feel free its excellent to talk. When you said you cried I remembered the way I felt when I found this group it was amazing, to think there is a whole world waiting to be discovered..... welcome and look forward to hearing from you soon. clare and emy herts, UK allygirl1967 <kaldi@...> wrote: Wow, l don't really know where to start,finding this support group is a real blessing.l'm a 38 year old mum with 4 children,l myself have blepharophimosis as do 2 of my children,my 16 year old son and my 7 year old son.No one else in my family has this condition,I'm the eldest of six children and have 10 neices and nephews.After looking at the photo's on this site I began to cry,it was like looking through my own photo's.What beautiful children we have.I look forward to hearing from you as I know now we are not the only ones with this condition.I live on the Gold coast in Queensland,Australia and would love to catch up with any one living up here.Ally. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2006 Report Share Posted March 4, 2006 Ally, I have only one child, a 13-year-old son. I suspect he has a very mild dose of BPES, but it's not at all noticeable to the inexperienced observer. He hasn't had to have any surgery for ptosis or telecanthus / epicanthus-inversus, but he has had surgery for entropion, which sometimes is part of the BPES territory. On the other hand I had a substantial set of surgeries when I was young, mostly by at the Mater in Sydney. Melbourne has some fine BPES-experienced doctors. I interviewed one when we were looking for a surgeon for Chris's entropion. He had a look at my lids too and that's where I learned I had an ectropion to go with my trichiasis. No surgeon had ever mentioned that to me before. If you want to look me up, I'm in the phone book as RA & JC at Pennant Hills. Rob W my mail wrote: > Thanks for your e-mail, it's great to know that we are not alone,and > being able to chat to someone who knows about bleph. We have only been > in Queensland for a year,moved up here from Mornington,. Do > you have any children with bleph? My two boys had their opps at The > Royal Childrens Hospital in Melbourne. look forward to hearing from > you. Ally. Re: blepharophimosis Hi ,new member. > > Hi Ally, > > 'ullo, g'day, etc. > > There are some folks with BPES who live in Brisbane, but I no longer > have their details, and none seem to be in this group, according to > the database at least. (There's a database of sorts on the site that > lists peoples' locations.) But there are some of us in Sinny and > Melb'n, plus Parkes, Adelaide and a few other sundry Oz locations. > Can't recall any others in the Cold Ghost, though. > > Anyhoo, if you're ever down our way look us up and we can maybe have > a chat. > > Rob W Syd-er-ney > > allygirl1967 wrote: >> Wow, l don't really know where to start,finding this support group >> is a real blessing.l'm a 38 year old mum with 4 children,l myself >> have blepharophimosis as do 2 of my children,my 16 year old son and >> my 7 year old son.No one else in my family has this condition,I'm >> the eldest of six children and have 10 neices and nephews.After >> looking at the photo's on this site I began to cry,it was like >> looking through my own photo's.What beautiful children we have.I >> look forward to hearing from you as I know now we are not the only >> ones with this condition.I live on the Gold coast in >> Queensland,Australia and would love to catch up with any one living >> up here.Ally. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Hi Rob, Like you I had most of my surgeries when I was young ,all done by Bernard O'Brien,unfortunately he died.He did do one opp on one of my sons eyes,then reffered me to Cleeland.She has been very helpful in the past by puting us in contact with the head of the Genes department at the Royal Childrens Hospital in Melbourne.My older son has donated blood to them about 4 years ago to help then with bleph.About 6 years ago we three meet with about 12 surgens at the RC Hospital in a conference like set up.They all took time asking us questions and looking at our eyes.I hope this helped with some understanding with BPES ,we also had photos taken to keep on record. I have spoken recently with my Doc's secretary and asked for our family records to be sent to me as I don;t know the names of the surgeries that I had as a child,as my records have been misplace by them not long after my surgen died. Its been so great hearing from you I would like to know more about your experiences. I look forward from you.Thanks for your e-mails, Ally & Family. Re: blepharophimosis Hi ,new member.> > Hi Ally,> > 'ullo, g'day, etc.> > There are some folks with BPES who live in Brisbane, but I no longer> have their details, and none seem to be in this group, according to> the database at least. (There's a database of sorts on the site that> lists peoples' locations.) But there are some of us in Sinny and> Melb'n, plus Parkes, Adelaide and a few other sundry Oz locations.> Can't recall any others in the Cold Ghost, though.> > Anyhoo, if you're ever down our way look us up and we can maybe have> a chat.> > Rob W Syd-er-ney> > allygirl1967 wrote:>> Wow, l don't really know where to start,finding this support group>> is a real blessing.l'm a 38 year old mum with 4 children,l myself>> have blepharophimosis as do 2 of my children,my 16 year old son and>> my 7 year old son.No one else in my family has this condition,I'm>> the eldest of six children and have 10 neices and nephews.After>> looking at the photo's on this site I began to cry,it was like>> looking through my own photo's.What beautiful children we have.I>> look forward to hearing from you as I know now we are not the only>> ones with this condition.I live on the Gold coast in>> Queensland,Australia and would love to catch up with any one living>> up here.Ally. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Ally, Unfortunately, surgeons don't last forever, and they're not particularly particular about keeping records alive. My original surgeon retired, then before I could find a new one (I don't see them very often, just a check-up every 4 years or so), his replacement also retired, and destroyed all his medical records. D'oh! So I had to break in a 'new' guy (he appears to be over 60) from scratch - although he was originally trained by my original surgeon - he did (the first attempt at...) my son's entropion repair. C'est lavvy. We spoke (about 15 years ago) to the head of genetics at our nearest children's hospital (RAHC at Camperdown, since moved to Westmead), who came armed with some info he'd looked up just prior to meeting us. Hitherto, he'd never heard of BPES. All he could tell us was I had a 50% chance (per child) of passing it on. Otherwise, he and his apprentice were pretty much a waste of carbon for us. Interesting to hear about the 12-surgeon hook-up. A little visibility can't help. It's a rare enough condition that most ophthalmic surgeons never see a case in their lives. But that's 12 who'll at least know it if they see it. Regards, Rob W my mail wrote: > Hi Rob, > > Like you I had most of my surgeries when I was young ,all done by > Bernard O'Brien,unfortunately he died.He did do one opp on one of my > sons eyes,then reffered me to Cleeland.She has been very > helpful in the past by puting us in contact with the head of the > Genes department at the Royal Childrens Hospital in Melbourne.My > older son has donated blood to them about 4 years ago to help then > with bleph.About 6 years ago we three meet with about 12 surgens at > the RC Hospital in a conference like set up.They all took time asking > us questions and looking at our eyes.I hope this helped with some > understanding with BPES ,we also had photos taken to keep on record. > > I have spoken recently with my Doc's secretary and asked for our > family records to be sent to me as I don;t know the names of the > surgeries that I had as a child,as my records have been misplace by > them not long after my surgen died. > > Its been so great hearing from you I would like to know more about > your experiences. > > I look forward from you.Thanks for your e-mails, > > Ally & Family. Re: blepharophimosis Hi ,new member. >> >> Hi Ally, >> >> 'ullo, g'day, etc. >> >> There are some folks with BPES who live in Brisbane, but I no >> longer have their details, and none seem to be in this group, >> according to the database at least. (There's a database of sorts on >> the site that lists peoples' locations.) But there are some of us >> in Sinny and Melb'n, plus Parkes, Adelaide and a few other sundry >> Oz locations. Can't recall any others in the Cold Ghost, though. >> >> Anyhoo, if you're ever down our way look us up and we can maybe >> have a chat. >> >> Rob W Syd-er-ney >> >> allygirl1967 wrote: >>> Wow, l don't really know where to start,finding this support >>> group is a real blessing.l'm a 38 year old mum with 4 children,l >>> myself have blepharophimosis as do 2 of my children,my 16 year >>> old son and my 7 year old son.No one else in my family has this >>> condition,I'm the eldest of six children and have 10 neices and >>> nephews.After looking at the photo's on this site I began to >>> cry,it was like looking through my own photo's.What beautiful >>> children we have.I look forward to hearing from you as I know now >>> we are not the only ones with this condition.I live on the Gold >>> coast in Queensland,Australia and would love to catch up with any >>> one living up here.Ally. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Hi Ally, Welcome to the group - I`m another from `downunder` but NZ not Oz. I have been a member of this group since about 2003, also blown away by the fact that so many others like me out there!! I have one daughter, age 19yrs also with BPES & she lives near Cairns, unfortunately not that close to the Gold Coast but she was down there recently to a wedding....... Theres a chance I may be going over soon, to Brisbane, like next week. I could arrange to meet up with you if you`re interested? You could just email me direct if you prefer..... Bye for now Maree --- In blepharophimosis , " allygirl1967 " <kaldi@...> wrote: > > Wow, l don't really know where to start,finding this support group is > a real blessing.l'm a 38 year old mum with 4 children,l myself have > blepharophimosis as do 2 of my children,my 16 year old son and my 7 > year old son.No one else in my family has this condition,I'm the > eldest of six children and have 10 neices and nephews.After looking at > the photo's on this site I began to cry,it was like looking through my > own photo's.What beautiful children we have.I look forward to hearing > from you as I know now we are not the only ones with this condition.I > live on the Gold coast in Queensland,Australia and would love to catch > up with any one living up here.Ally. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 Hi Maree, I would love to catch up with you,please let me know when you will be here, as I work Mon,Tue & Fri but I may be able to swap a shift.Monday is my sons B/day so I can't make it then,. I look forward to hearing from you. Bye Ally. blepharophimosis Re: Hi ,new member. Hi Ally,Welcome to the group - I`m another from `downunder` but NZ not Oz. I have been a member of this group since about 2003, also blown away by the fact that so many others like me out there!! I have one daughter, age 19yrs also with BPES & she lives near Cairns, unfortunately not that close to the Gold Coast but she was down there recently to a wedding.......Theres a chance I may be going over soon, to Brisbane, like next week. I could arrange to meet up with you if you`re interested? You could just email me direct if you prefer..... Bye for nowMaree>> Wow, l don't really know where to start,finding this support group is > a real blessing.l'm a 38 year old mum with 4 children,l myself have > blepharophimosis as do 2 of my children,my 16 year old son and my 7 > year old son.No one else in my family has this condition,I'm the > eldest of six children and have 10 neices and nephews.After looking at > the photo's on this site I began to cry,it was like looking through my > own photo's.What beautiful children we have.I look forward to hearing > from you as I know now we are not the only ones with this condition.I > live on the Gold coast in Queensland,Australia and would love to catch > up with any one living up here.Ally.> Quote Link to comment Share on other sites More sharing options...
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