Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Both my grandfather, my father, myself, and 2 of my kids have bleph. My grandfather is in his late 70's. He had surgery this year for the first time. He only had one eye done because he wasn't sure he would like the change. My father passed away when he was 29, so i don't really remember him, I was a month away from turning 6. I had my surgeries when i was 5 & 6. My sons surgeon wants to redo mine in a bad way. I'm content with the way i look now. I've been this way all my life so i figure why bother now at 32. My oldest son is 10 and his eyes look amazing. If you didn't know he had something wrong with his eyes before, you wouldn't even be able to tell. My youngest son is 5 and he just had his first surgery permanent surgery on Aug. 29. He had the epicanthus folds done. We go back on Jan. 7th, so hopefully we'll get another surgery date soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Feichtner <mfeichtner@...> wrote: Both my grandfather, my father, myself, and 2 of my kids have bleph. My grandfather is in his late 70's. He had surgery this year for the first time. He only had one eye done because he wasn't sure he would like the change. My father passed away when he was 29, so i don't really remember him, I was a month away from turning 6. I had my surgeries when i was 5 & 6. My sons surgeon wants to redo mine in a bad way. I'm content with the way i look now. I've been this way all my life so i figure why bother now at 32. My oldest son is 10 and his eyes look amazing. If you didn't know he had something wrong with his eyes before, you wouldn't even be able to tell. My youngest son is 5 and he just had his first surgery permanent surgery on Aug. 29. He had the epicanthus folds done. We go back on Jan. 7th, so hopefully we'll get another surgery date soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Feichtner <mfeichtner@...> wrote: Both my grandfather, my father, myself, and 2 of my kids have bleph. My grandfather is in his late 70's. He had surgery this year for the first time. He only had one eye done because he wasn't sure he would like the change. My father passed away when he was 29, so i don't really remember him, I was a month away from turning 6. I had my surgeries when i was 5 & 6. My sons surgeon wants to redo mine in a bad way. I'm content with the way i look now. I've been this way all my life so i figure why bother now at 32. My oldest son is 10 and his eyes look amazing. If you didn't know he had something wrong with his eyes before, you wouldn't even be able to tell. My youngest son is 5 and he just had his first surgery permanent surgery on Aug. 29. He had the epicanthus folds done. We go back on Jan. 7th, so hopefully we'll get another surgery date soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Feichtner <mfeichtner@...> wrote: Both my grandfather, my father, myself, and 2 of my kids have bleph. My grandfather is in his late 70's. He had surgery this year for the first time. He only had one eye done because he wasn't sure he would like the change. My father passed away when he was 29, so i don't really remember him, I was a month away from turning 6. I had my surgeries when i was 5 & 6. My sons surgeon wants to redo mine in a bad way. I'm content with the way i look now. I've been this way all my life so i figure why bother now at 32. My oldest son is 10 and his eyes look amazing. If you didn't know he had something wrong with his eyes before, you wouldn't even be able to tell. My youngest son is 5 and he just had his first surgery permanent surgery on Aug. 29. He had the epicanthus folds done. We go back on Jan. 7th, so hopefully we'll get another surgery date soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Feichtner <mfeichtner@...> wrote: Both my grandfather, my father, myself, and 2 of my kids have bleph. My grandfather is in his late 70's. He had surgery this year for the first time. He only had one eye done because he wasn't sure he would like the change. My father passed away when he was 29, so i don't really remember him, I was a month away from turning 6. I had my surgeries when i was 5 & 6. My sons surgeon wants to redo mine in a bad way. I'm content with the way i look now. I've been this way all my life so i figure why bother now at 32. My oldest son is 10 and his eyes look amazing. If you didn't know he had something wrong with his eyes before, you wouldn't even be able to tell. My youngest son is 5 and he just had his first surgery permanent surgery on Aug. 29. He had the epicanthus folds done. We go back on Jan. 7th, so hopefully we'll get another surgery date soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Welcome & all other new members to this group!! As far as we can recall, up to our grandfather level (I am 50 and my wife is 42 with 2 children apiece) with no blep. However, our child (Anushka - see photos posted - born 3 months ago) has what we all suspect to be blep. We are now fighting this out and it will be a long drawn affair. The eye surgeon here says the the first operation should be done when she is 2 years old. The Gene profiling shows she has no problems and she is genetically perfect (to us she is puuuuuuuuuuuuurfect!!). However know from some other members here that a specific test is needed and done in very few places in the world to be able to detect blep. Thats all for now. Glad to read what others said/say/do/did. Kind regards Lata & Deepakannaloretta17692 <annaloretta17692@...> wrote: Hello my name is and I am new to this support group.I am a 48 year old female with documented Belpharophimosis type 1.I hope to talk with other adults who have this disease/disorder.If this is you PLEASE feel free to email me I look forward to hearing from you.If your in the medical field and would like to visit I am here and I would like to visit with you as well.You cant imagine my delight when I discovered theres a support group on line for this ........ALOT has changed in 48 years of having this.I have always wondered something? How old is the oldest living person with this disease/disorder? Do any of you know?I grew up with pretty much so NO INFORMATION about this disease. It was shall I say kept in the closet by our family and or there wasnt much know back then.Looking forward to hearing from you.....Take care and smile.Its medicine for the soul. in Washington State Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 , My grandfathers one eye looks pretty good. It looks nothing like my oldest sons though. My grandfathers was as bad as my sons. My youngest sons is worse than my oldest. I have to wear glasses now, but i didn't need them until recently. And of course i don't wear them. My oldest sons vision is 20/20, but my youngest son has alot of vision problem. He started wearing glasses shortly before his 2nd bday and has been getting a new prescription every 3 months. He also has had surgery for duanes retraction syndrome, but in all honesty...i don't think it helped any. I think he is just used to seeing the way he did before and hasn't adjusted well. He will be looking at the tv, but his head will be turned slightly. When he had his eye exam last time i mentioned it the doc. Even at the exam when you covered up one eye he would turn his head so he could see but he couldn't make out anything. If you left the eye uncovered he could see. They told me not to worry about it and to let him turn his head. Doesn't make sense to me though. I'm not really sure how my grandfathers vision was when he was younger, but he's been wearing glasses as long as i can remember. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2003 Report Share Posted December 17, 2003 Feichtner <mfeichtner@...> wrote: , My grandfathers one eye looks pretty good. It looks nothing like my oldest sons though. My grandfathers was as bad as my sons. My youngest sons is worse than my oldest. I have to wear glasses now, but i didn't need them until recently. And of course i don't wear them. My oldest sons vision is 20/20, but my youngest son has alot of vision problem. He started wearing glasses shortly before his 2nd bday and has been getting a new prescription every 3 months. He also has had surgery for duanes retraction syndrome, but in all honesty...i don't think it helped any. I think he is just used to seeing the way he did before and hasn't adjusted well. He will be looking at the tv, but his head will be turned slightly. When he had his eye exam last time i mentioned it the doc. Even at the exam when you covered up one eye he would turn his head so he could see but he couldn't make out anything. If you left the eye uncovered he could see. They told me not to worry about it and to let him turn his head. Doesn't make sense to me though. I'm not really sure how my grandfathers vision was when he was younger, but he's been wearing glasses as long as i can remember. Quote Link to comment Share on other sites More sharing options...
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