Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi Penny.. welcome to the group.. my son Ethan is 5 and has BPES.. I have 3 other boys without it and we live in Hastings Nz... Do you have any children? blepharophimosis Hello there I am a 39 year old woman with congenital blepharophimosis and have just now started questioning what all has been done with my eyes and have found out so much. I am also surprised that there are other people with the same thing!! I never even knew what was wrong with me had a name! I have had six surgeries at the University of Florida (Shands Teaching Hospital) the first in 1966. I just wanted to say hi. Sincerely, Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 hi penny...my husband, daughter (who has bpes) and i live in north georgia...i noticed that you have had surgeries at shands and was wondering where you live (i went to univeristy of florida and am from florida)...welcome to the site...debbie From: pixiedust7764 blepharophimosis Sent: Sunday, June 13, 2004 1:48 PM Subject: blepharophimosis Hello there I am a 39 year old woman with congenital blepharophimosis and have just now started questioning what all has been done with my eyes and have found out so much. I am also surprised that there are other people with the same thing!! I never even knew what was wrong with me had a name! I have had six surgeries at the University of Florida (Shands Teaching Hospital) the first in 1966. I just wanted to say hi. Sincerely, Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2004 Report Share Posted June 18, 2004 leah <leahs_male@...> wrote: Hi Leah, Thanks for the welcome! I do not have any children so I have no idea if I would have passed it on! I am the first in my family with BPES. Penny Hi Penny.. welcome to the group.. my son Ethan is 5 and has BPES.. I have 3 other boys without it and we live in Hastings Nz... Do you have any children? blepharophimosis Hello there I am a 39 year old woman with congenital blepharophimosis and have just now started questioning what all has been done with my eyes and have found out so much. I am also surprised that there are other people with the same thing!! I never even knew what was wrong with me had a name! I have had six surgeries at the University of Florida (Shands Teaching Hospital) the first in 1966. I just wanted to say hi. Sincerely, Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2007 Report Share Posted May 8, 2007 Hi Dan: I've been collecting information for a few months now. C. Is a member of PLS group.And he's the one that told me of this group. It is something that I am eager to start. My problem is I'm not able to get to doctors regularly. No insurance and low funds, but full of hope and gratitude. I'm going in July to have my pump filled, and I'm asking her. My next step will be try the doctor that Conni has been so kind to give me. Thanks for your inquiring. Robin -- [low dose naltrexone] Hello there Have you found out much about the low dose naltrexone.O hope to here back.Sincerely Dan>> , do you have Dr. Ayers phone number handy for Robin? Conni> Quote Link to comment Share on other sites More sharing options...
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