Guest guest Posted August 29, 2003 Report Share Posted August 29, 2003 Hi Anja, I agree with : I think we can close our eyes after surgeries, but not when we sleep. Now I sleeep with a mask like we get in plane. Every evening, I first put artificial tears in my eyes and I put the mask on my eyes. It prevents partially my eyes from losing tears and permits me to sleep more because the light awakes me. If a person doesn't have many tears and if she can't close her eyes, I think that she can become blind because the cornee suffered too much. But now, if we can close our eyes during the day and if we use artificial tears, I think that we can live normally and not become blind. Of course, it depends on the quality and the quantity of the tears. In the hospital where I had surgeries, I met a boy who was maybe 12 years old and was blind because his eyes were totally closed because of BPES. Two sisters had to lead him. His parents found the right hospital in Paris too late for him. So I think that surgeries are very important. But it depends on the level of BPES. The beautiful baby from whom we saw recently a pic has quite big eyes (what do you think about that ? we all have a different experience and I am alone with BPES in my family). Mine were not so big. Sometimes, people don't even need surgeries (the daughter of a friend of mine didn't need any surgery whereas her father had many surgeries); now she is an adult and has no particular problem). If the child have a normal wide vision, it can be better not to practice any surgery because of the risk of dry eyes. It was really difficult for my parents too to have the right information about BPES. Some doctors told I was sleeping all the time. An ophtalmologist wanted me to have something to keep my eyes opened all day long but it would have been too dangerous : I could have become blind because of a child pushing me for example. So I think we are very lucky to have soon the good diagnose. Of course I understand that all parents are worry about their child with BPES. But I think it was more difficult for my parents than for me. It is really important that this group exists and that we exchange information to help us each others. Excuse me, it is difficult for me to write in english. I can't do good transitions between different subjects like I can do easily in french. Ask me if you don't understand something, I will find the right words in a dictionnary to say it correctly. ----Message réexpédié---- >A: blepharophimosis >De: " Anja Shahin " <anjashahin@...> >Date: Wed, 27 Aug 2003 12:31:16 -0000 >Sujet: blepharophimosis Re: BPES : 14 month old from Germany > >Hi , > >thanks for sharing your experience and the adresses. You are talking >about a the tear problem, actually one of my major concerns ..... as >a does not seem to have tears at all (not even when she is >crying). However it does not seem to be a problem right now, but I am >afraid that it will get worse after surgery. We have been told by a >plastic surgeon that she will not be able to close her eyes after >surgery any more and that this could cause major problems, even lead >to blindness!!!!!!! Im totally confused now of course. Hope to >hearing from one of you who has had the surgery done already. > >Anja > > > >> Hello, >> >> My name is . I'm french. I'm 30 years old. I have BPES. >> I want to answer to and Anja. >> >> Anja, I am a sporadic case of BPES. It means that nobody in my >family has BPES, except me. No matter. I am not asking myself all day >long if one of my parents had geneticly somethin wrong. They have no >responsability in my BPES. What'smore, BPES is not an handicap if the >parents find a surgeon. Thanks to surgeries, we can see and live >normally. Of course, we have problems to bear the light of the sun >and sometimes electric light, we have not many tears and they are of >bad quality. We look a bit different. I >> don't shame my difference, I'am proud of it. >> >> And if I can have a baby (I don't know if I can or not because of >BPES), my baby will maybe have BPES (50% it has BPES, 50% it has >not).If it has BPES, I know how to help it, because I lived the same >things it lives. >> >> Anja, your daughter should get a genetic testing too, because you >(and she) would maybe know if she will have problems of premature >ovarian failure (POF), that concern sometimes women who have BPES. >> >> In Paris, several hopital make surgeries. I had three surgeries in >Hôpital Saint Antoine, but my surgeon doesn't work anylonger (Pr >SARAUX). >> >> In Hôpital NECKER-ENFANTS MALADES, you can contact Pr Jean-Louis >DUFIER (00.33.1.44.49.45.02). The address is 149 -161 rue de Sèvres >75015 PARIS, Métro DUROC. >> >> I have no name of surgeon in these hopitals, but you can phone and >ask about surgeons specialized in eyelid surgeries : >> >> Hôpital Saint Antoine 184, rue du Faubourg Saint Antoine 75012 >PAris (00.33.1.49.28.00) >> >> Hôpital des QUINZE-VINGT, 28 rue de Charenton 75571 Paris cedex 12 >(00.33.1.40.02.15.20) >> >> Hôpital ROTHSCHILD 33, boulevard Picpus 75012 PARIS >(00.33.1.40.19.30.00) >> >> If you need some help, I can phone and take a rendez vous for you. >> >> For the surgeries, it's better when you don't consider only the >esthetic problem. Because of the bad quality of tears, and because >the tears become rare (it happened after I began to take the pill), >it's better not to have too big eyes because we can't close them in >the night. As a child, we often have too many tears (and people are >very bad for the mummy because our eyes are not clean) and as an >adult, not enough. I think that what's really important is to be able >to see normally. >> >> I hope you will understand my bad english ! >> >> Good luck in your search of a surgeon. >> >> >> >> ----Message réexpédié---- >> >A: blepharophimosis >> >De: " Anja Shahin " <anjashahin@h...> >> >Date: Wed, 13 Aug 2003 13:13:22 -0000 >> >Sujet: blepharophimosis 14 month old from Germany >> > >> >Hi, >> > >> >I live in Germany, our 14 month old a has BPES, she was born >in >> >the USA (Seattle). She has been diagnosed when she was 2 month >old. >> >We have just moved to Berlin-Germany. Apearantly there is no need >for >> >surgery right now because her vision is not affected. She has no >> >motoric problems, startet crawling at the age of 6 month, walking >at >> >13 month. >> >We were advised in Seattle to wait with the surgery until the age >of >> >4-5y, however we are looking for a plastic surgeon in Europe who >has >> >experience with the epicantus and ptosis procedure. Has anyone of >you >> >heard of specialists in Europe? I´d be greatful for some advise. >> >We are getting a genetic testing next week as my husband and I do >not >> >have BPES but my husbands sister has had ptosis (without epicantus >> >etc..) so the doctors wonder if she might have inherited her >> >condition from her father although he does not have it himself ... >> >Hope to hearing from you soon, >> > >> >Anja >> > >> > >> > >> > >> > Quote Link to comment Share on other sites More sharing options...
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