Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Hi Rob....Always love to read your thoughts, ...You put such a positive spin on the whole thing, and reassure that its so insignificant compared to those who have such extreme differences...It makes bleph seem like nothing at all, but people remind us when they have to stare like they have something wrong, I'm so used to Ethan that I actually think to myself *why are you steering at my baby!...does he really look so different!* but to others who don't know I guess *yes* he probably does, but oh well, it definately makes him even more unique:)... I know I have asked you before about photos, If I remember rightly you don't have a scanner?...When you can post pix of yourself and your children, we'll be very happy to see them:)...Where are are you from again?...U.S right, it's 12.45am here, so off to bed....going away camping for 3 nights with the family for new-years! So again...have a great new-year.......Leanne and family (NZ) -- blepharophimosis A Parent's Tale On one of my visits to my ophthalmic surgeon when I was in my early20s, he casually mumbled (as eye surgeons are sometimes inclined todo) something about there being a 25% chance of my passing on BPEI tomy children. I thought little of it at the time, as my wife and I hadno intention of starting a family just then.Some years later we were ready to start a family and I was concernedabout whether I ought to be bringing a child into the world that mightsuffer as I had done. This is the cross that BPEI-carrying parentsbear. I asked my surgeon to tell me more about the genetics of BPEI.Not knowing much more (well, he's a surgeon not a geneticist), heinstead referred me to, and sent an introduction to, the Professor ofGenetics at our city's main children's hospital, where they have agenetic counselling service. His pre-introduction enabled the geneticcounsellors to do some research before we arrived, so we avoided theusual "blepharo-WHAT?" response.Armed with family photos and several pages of questions, we thoroughlystretched the newly-acquired knowledge of the professor and hisregistrar about the genetics of BPEI. After about an hour and a half(we still had some questions to get to), they had run out of time andbegged us to let them summarise. We showed uncharacteristic mercy andallowed them to give us the following wrap-up:1. There is a 50% chance of passing on BPEI (not 25% as my surgeon hadthought)2. BPEI is not always fully expressed. That is, even if it is passedon, a child might have a mild dose of BPEI and show no or partialsymptoms.3. Even if it is passed on and fully expressed, modern surgicaltechniques can correct BPEI pretty successfully. They pointed out thesuccess of my own surgeries, even back when the techniques were stillbeing refined. Further, surgery is usually performed early, so a BPEIchild will only look "different" up to about school age, and be"normal" forever after. Many BPEI folks can't (or barely can) rememberthe trauma of their surgeries – and they're a lot less traumatic thesedays.4. Even without surgery (as long as sight is not occluded by ptosis),BPEI folks live a pretty normal life, as far as quality of life isconcerned - again, they pointed to my own case. Without wanting tobelittle or trivialise BPEI in any way, they then reminded us thatevery day they see people with major life-disturbing genetic problemswhich can impact quality-of-life in a major way, such as haemophilia,missing limbs, etc, etc. In the spectrum of possible genetic problems,BPEI wasn't too bad (and it's correctible to some extent).5. What are you waiting for? Go home and make babies.We were greatly encouraged and comforted by this advice, and I wantedto share that comfort and encouragement with the new parents,parents-to-be, and would-be (if could-be) parents out there who mightbe anxious, as we were, about bringing BPEI kids into the world. Inthe worst case, it's truly rough for about the first 5 or 6 years, butfine in the longer term. We have never regretted our decision to takethe plunge. Let not your hearts be troubled.Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 leelee wrote: > Hi Rob....Always love to read your thoughts, ...You put such a positive > spin on the whole thing, and reassure that its so insignificant compared to > those who have such extreme differences...It makes bleph seem like nothing > at all, I really hope I haven't sounded like I'm trivialising BPEI. Although BPEI is not as bad as many other things, it's still no walk in the park and is serious enough for young kids and their parents. It's just that being somewhat correctable, it later gets better (after being corrected) and the painful memories fade with time. > but people remind us when they have to stare like they have > something wrong, I'm so used to Ethan that I actually think to myself *why > are you steering at my baby!...does he really look so different!* but to > others who don't know I guess *yes* he probably does, but oh well, it > definately makes him even more unique:)... This (and the surgery) is the worst part of BPEI: Looking so obviously " different " . It's frustrating that we can't do much about it, and painful to see peoples' reactions. I wish my mum could post here and help with that aspect (but she's too tied up elsewhere). > I know I have asked you before > about photos, If I remember rightly you don't have a scanner?...When you can > post pix of yourself and your children, we'll be very happy to see them:).. Be afraid... be very afraid... > Where are are you from again?...U.S right, Aaargh! Heaven Forbid! I'm from the Big West Island of your country. (I dare not call it " The Mainland " , right? ;-) ) > it's 12.45am here, so off to bed. > ..going away camping for 3 nights with the family for new-years! I can't think of anywhere better to go camping than NZ. If only I could stand camping... Have fun. Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2003 Report Share Posted December 29, 2003 Thanks for making up Rob by writing these informing and funny messages! Bernice (Ninas mum) > > > Hi Rob....Always love to read your thoughts, ...You put such a positive > > spin on the whole thing, and reassure that its so insignificant compared to > > those who have such extreme differences...It makes bleph seem like nothing > > at all, > > I really hope I haven't sounded like I'm trivialising BPEI. Although > BPEI is not as bad as many other things, it's still no walk in the park > and is serious enough for young kids and their parents. It's just that > being somewhat correctable, it later gets better (after being corrected) > and the painful memories fade with time. > > > but people remind us when they have to stare like they have > > something wrong, I'm so used to Ethan that I actually think to myself *why > > are you steering at my baby!...does he really look so different! * but to > > others who don't know I guess *yes* he probably does, but oh well, it > > definately makes him even more unique:)... > > This (and the surgery) is the worst part of BPEI: Looking so obviously > " different " . It's frustrating that we can't do much about it, and > painful to see peoples' reactions. I wish my mum could post here and > help with that aspect (but she's too tied up elsewhere). > > > I know I have asked you before > > about photos, If I remember rightly you don't have a scanner?...When you can > > post pix of yourself and your children, we'll be very happy to see them:).. > > Be afraid... be very afraid... > > > Where are are you from again?...U.S right, > > Aaargh! Heaven Forbid! I'm from the Big West Island of your country. (I > dare not call it " The Mainland " , right? ;-) ) > > > it's 12.45am here, so off to bed. > > ..going away camping for 3 nights with the family for new-years! > > I can't think of anywhere better to go camping than NZ. If only I could > stand camping... Have fun. > > Rob Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 -- Re: blepharophimosis A Parent's Tale Yes, we know its going to be no walk in the park, we will have to try to ignore people, easier said than done...but anyways, ......So I guess *be afraid* means NO PIX:(....?...From OZ ha! Never been there, heard it's beautiful, we're your closest neighbour, and I have flown on by a few times, my mum's husband is american so we got stationed in Hawaii in 1991, met my husband (who's american) a couple months after we got there, still happily together, but moved back here to NZ a couple years ago, bit expensive to live in Hawaii, miss it tremendously though:(, Will have to make aussie our next vacation with the kiddies...where do you suggest?....Has to be warm and lots of good shopping:).... So you don't like camping ha!....We arn't really roughing it, have our caravan to sleep in, showers etc...don't think I could rough it much more than that, especially with 2 kiddies:), anyways, have a good day mate:)...kia-ora from down-under!leelee wrote:> Hi Rob....Always love to read your thoughts, ...You put such a positive> spin on the whole thing, and reassure that its so insignificant compared to> those who have such extreme differences...It makes bleph seem like nothing> at all,I really hope I haven't sounded like I'm trivialising BPEI. Although BPEI is not as bad as many other things, it's still no walk in the park and is serious enough for young kids and their parents. It's just that being somewhat correctable, it later gets better (after being corrected) and the painful memories fade with time.> but people remind us when they have to stare like they have> something wrong, I'm so used to Ethan that I actually think to myself *why> are you steering at my baby!...does he really look so different!* but to> others who don't know I guess *yes* he probably does, but oh well, it> definately makes him even more unique:)...This (and the surgery) is the worst part of BPEI: Looking so obviously "different". It's frustrating that we can't do much about it, and painful to see peoples' reactions. I wish my mum could post here and help with that aspect (but she's too tied up elsewhere).> I know I have asked you before> about photos, If I remember rightly you don't have a scanner?...When you can> post pix of yourself and your children, we'll be very happy to see them:)..Be afraid... be very afraid...> Where are are you from again?...U.S right,Aaargh! Heaven Forbid! I'm from the Big West Island of your country. (I dare not call it "The Mainland", right? ;-) )> it's 12.45am here, so off to bed.> ..going away camping for 3 nights with the family for new-years!I can't think of anywhere better to go camping than NZ. If only I could stand camping... Have fun.Rob Quote Link to comment Share on other sites More sharing options...
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