Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hi Dawn If you visit the web site, click on Database, you’ll see a row called “BPES List”. (take a look at the screenshot below) Once you have clicked on that you’ll see a database of people and their surgery information. Many people have put the names and surgeons, treatment, and hospitals in this list already. It would be great if people would continue to use this list, and add to it. There are 165 names in it already. Our group has 890 people in it … so it would be good to see some more people adding their details to the list. Remember that you can put in as little or as much information as you like. If you want to see people in the USA, click the arrow next to country, that sorts the list in country order, then you can use the scroll bars, and the “next” and “previous” buttons to reach USA. You can also search by the name of the specialist … by putting their name in the Search box. Please take a moment to have a look. There is one important thing to consider. These are the founding principals of the group: We encourage you to share your experiences, suggestions or questions with regard to treatment options or information about BPES. This exchange is beneficial as part of our on-going education process and assessment of information about blepharophimosis. But we discourage endorsing any particular treatment options. We feel that it is important to facilitate this exchange of information as support for one another, and to consult your medical specialists for their professional recommendations. The best way to find an oculoplastic surgeon is via your doctor, paediatrician, genetics doctor. Alternatively – in the UK you can look here: http://www.bopss.org/plugins/geo_search/show_geo.php I will find out what the equivalent web site is in the USA and post it here. I hope that this helps. Shireen Mohandes, London, England From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of li.dawn Sent: 14 December 2009 19:54 blepharophimosis Subject: blepharophimosis " Good doctors " List I was wondering if we can start a list of good doctors that people would recommend based on personal experience. For us, there are only a couple of pediatric opthamologists locally. We've seen both but still wanted to see more. One was not even patient enough to let me finish my questions. The other is much nicer, but it seems he thinks not being able to fully close eyes after the sling surgery is not abnormal and is kind of the effect of the eyelid lift surgey is supposed to do. We'd like to know if there are good ones in other states (we are in the U.S.) and are willing to try. I think some sort of lists of this nature (regardless of which country the doctor is in) should help to people who just know about the condition and have just started the journey of getting proper surgeries done. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hi- I have 5 kids and 2 of them have BPES.One Girl 4yrs and One Boy 11 yrs. The other 3 kids don't have BPES nor my husband and I . The best doctor in the Boston , MA Area is Doctor Townsend Mass Eye and Ear 175 Cambridge Street Boston, MA 02114 (617)723-3937 We live around 1 hr away. When my 1st son was born w/ BPES we were told he had BPES the 2nd day in the hospital. I original went to Childrens Hospital to see Dr Rob. He was getting ready to retire. Dr Townsend was reccommend to my Husband and I. He is AMAZING!!! I had 3 more kids w/o BPES. My last child that is a Girl is 4 yrs old and Dr. Townsend operated on her as well. I hope this helps.- Have a Fun & Safe Holiday Season. a Crowley Middleboro, MA blepharophimosis "Good doctors" List I was wondering if we can start a list of good doctors that people would recommend based on personal experience. For us, there are only a couple of pediatric opthamologists locally. We've seen both but still wanted to see more. One was not even patient enough to let me finish my questions. The other is much nicer, but it seems he thinks not being able to fully close eyes after the sling surgery is not abnormal and is kind of the effect of the eyelid lift surgey is supposed to do. We'd like to know if there are good ones in other states (we are in the U.S.) and are willing to try. I think some sort of lists of this nature (regardless of which country the doctor is in) should help to people who just know about the condition and have just started the journey of getting proper surgeries done.Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Hi, I find this really interesting that you and your husband do not have BPES but two of your children have it.I thought that this is a very small chance to have a child with BPES if you do not have it in your family.Are there any other people that has more than 1 child with BPES even they do not have it in their family?Really an interesting situation. Pinar(from Turkey-Istanbul) From: "PJC930@..." <PJC930@...>blepharophimosis Sent: Mon, December 14, 2009 11:13:49 PMSubject: Re: blepharophimosis "Good doctors" List Hi- I have 5 kids and 2 of them have BPES.One Girl 4yrs and One Boy 11 yrs. The other 3 kids don't have BPES nor my husband and I . The best doctor in the Boston , MA Area is Doctor Townsend Mass Eye and Ear 175 Cambridge Street Boston, MA 02114 (617)723-3937 We live around 1 hr away. When my 1st son was born w/ BPES we were told he had BPES the 2nd day in the hospital. I original went to Childrens Hospital to see Dr Rob. He was getting ready to retire. Dr Townsend was reccommend to my Husband and I. He is AMAZING!!! I had 3 more kids w/o BPES. My last child that is a Girl is 4 yrs old and Dr. Townsend operated on her as well. I hope this helps.- Have a Fun & Safe Holiday Season. a Crowley Middleboro, MA blepharophimosis "Good doctors" List I was wondering if we can start a list of good doctors that people would recommend based on personal experience. For us, there are only a couple of pediatric opthamologists locally. We've seen both but still wanted to see more. One was not even patient enough to let me finish my questions. The other is much nicer, but it seems he thinks not being able to fully close eyes after the sling surgery is not abnormal and is kind of the effect of the eyelid lift surgey is supposed to do. We'd like to know if there are good ones in other states (we are in the U.S.) and are willing to try. I think some sort of lists of this nature (regardless of which country the doctor is in) should help to people who just know about the condition and have just started the journey of getting proper surgeries done.Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 I know it is. I did have some genetic testing on my son (He was my first born) and they said it was just a freak thing to have and that it was not likely to have another child with BPES. So we had 3 more kids that dont have it. We decided to have 5th to try to have a girl for my 7 yr old. My 5th and a girl was born with BPES. She didnt open her eyes for 2 wks after she was born. My son opened his the 2nd day he was born. The hospital were they both were born delivered 36,000 children between my son and my daughter. My son and daughter were the only ones that had BPES. She now weres glasses at age 4 for her stigmatisum in her eyes. My 11 son doesnt wear glasses at all. Me and my husband researched back to our great grandparents and no one had anything wrong. I did when I was a kid had one lazey eye. I hope this info helps.- a a J. Crowley blepharophimosis "Good doctors" List I was wondering if we can start a list of good doctors that people would recommend based on personal experience. For us, there are only a couple of pediatric opthamologists locally. We've seen both but still wanted to see more. One was not even patient enough to let me finish my questions. The other is much nicer, but it seems he thinks not being able to fully close eyes after the sling surgery is not abnormal and is kind of the effect of the eyelid lift surgey is supposed to do. We'd like to know if there are good ones in other states (we are in the U.S.) and are willing to try. I think some sort of lists of this nature (regardless of which country the doctor is in) should help to people who just know about the condition and have just started the journey of getting proper surgeries done.Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Tailynn Has BPES.... SHe is the only one in our family both sides going back as far as my greatgrandmother/ father 4x's They told us she just the first in her generation to have had it.. and a 50% chance of her passing on the gene. We have 3 girls all togther. Mommy2My3BeautifulAngels From: "PJC930@..." <PJC930@...>blepharophimosis Sent: Tue, December 15, 2009 7:44:28 AMSubject: Re: blepharophimosis "Good doctors" List I know it is. I did have some genetic testing on my son (He was my first born) and they said it was just a freak thing to have and that it was not likely to have another child with BPES. So we had 3 more kids that dont have it. We decided to have 5th to try to have a girl for my 7 yr old. My 5th and a girl was born with BPES. She didnt open her eyes for 2 wks after she was born. My son opened his the 2nd day he was born. The hospital were they both were born delivered 36,000 children between my son and my daughter. My son and daughter were the only ones that had BPES. She now weres glasses at age 4 for her stigmatisum in her eyes. My 11 son doesnt wear glasses at all. Me and my husband researched back to our great grandparents and no one had anything wrong. I did when I was a kid had one lazey eye. I hope this info helps.- a a J. Crowley blepharophimosis "Good doctors" List I was wondering if we can start a list of good doctors that people would recommend based on personal experience. For us, there are only a couple of pediatric opthamologists locally. We've seen both but still wanted to see more. One was not even patient enough to let me finish my questions. The other is much nicer, but it seems he thinks not being able to fully close eyes after the sling surgery is not abnormal and is kind of the effect of the eyelid lift surgey is supposed to do. We'd like to know if there are good ones in other states (we are in the U.S.) and are willing to try. I think some sort of lists of this nature (regardless of which country the doctor is in) should help to people who just know about the condition and have just started the journey of getting proper surgeries done.Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Shireen, Thank you for the suggestions and the various lists you created for each country. I actually did visit the database before I post the original message. As you pointed out, the information on doctors and institutions is limited and sometimes dated. I also took down a few doctor names from that database. Thank you a for giving us your doctor's name. I was about to ask the same question about your two children. The good thing is that you have found a great doctor. With the stats you provided in your message (out of 36,000 babies, your two are the only ones with the condition), I'm now really worried about the experience of a doctor has if we just randomly pick one. Thanks. > > Hi Dawn > > If you visit the web site, click on Database, you'll see a row called " BPES > List " . (take a look at the screenshot below) > > Once you have clicked on that you'll see a database of people and their > surgery information. > > Many people have put the names and surgeons, treatment, and hospitals in > this list already. > > It would be great if people would continue to use this list, and add to it. > > There are 165 names in it already. Our group has 890 people in it . so it > would be good to see some more people adding their details to the list. > > Remember that you can put in as little or as much information as you like. > > If you want to see people in the USA, click the arrow next to country, that > sorts the list in country order, then you can use the scroll bars, and the > " next " and " previous " buttons to reach USA. > > You can also search by the name of the specialist . by putting their name in > the Search box. > > Please take a moment to have a look. > > There is one important thing to consider. > > > > These are the founding principals of the group: > > We encourage you to share your experiences, suggestions or questions with > regard to treatment options or information about BPES. This exchange is > beneficial as part of our on-going education process and assessment of > information about blepharophimosis. > > > > But we discourage endorsing any particular treatment options. We feel that > it is important to facilitate this exchange of information as support for > one another, and to consult your medical specialists for their professional > recommendations. > > > > The best way to find an oculoplastic surgeon is via your doctor, > paediatrician, genetics doctor. > > Alternatively - in the UK you can look here: > http://www.bopss.org/plugins/geo_search/show_geo.php > > I will find out what the equivalent web site is in the USA and post it here. > > I hope that this helps. > > Shireen Mohandes, London, England > > > > > > > > From: blepharophimosis > [mailto:blepharophimosis ] On Behalf Of li.dawn > Sent: 14 December 2009 19:54 > blepharophimosis > Subject: blepharophimosis " Good doctors " List > > > > > > I was wondering if we can start a list of good doctors that people would > recommend based on personal experience. For us, there are only a couple of > pediatric opthamologists locally. We've seen both but still wanted to see > more. One was not even patient enough to let me finish my questions. The > other is much nicer, but it seems he thinks not being able to fully close > eyes after the sling surgery is not abnormal and is kind of the effect of > the eyelid lift surgey is supposed to do. We'd like to know if there are > good ones in other states (we are in the U.S.) and are willing to try. > > I think some sort of lists of this nature (regardless of which country the > doctor is in) should help to people who just know about the condition and > have just started the journey of getting proper surgeries done. > > Thanks. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Wow, that really is unusual. So far as I was aware, the only two options of becoming a BPES carrier are either genetic mutation, are receiving the gene from a parent. Following this logic, this means that you had 2 kids with genetic mutations resulting in BPES – that is statistically almost impossible, I would guess. That must mean that there is another genetic factor at play – I am sure some of the doctors studying the genetics of BPES would be very interested in this. In any case, thanks for sharing this! Best, Micah From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of PJC930@... Sent: Tuesday, December 15, 2009 11:44 PM blepharophimosis Subject: Re: blepharophimosis " Good doctors " List I know it is. I did have some genetic testing on my son (He was my first born) and they said it was just a freak thing to have and that it was not likely to have another child with BPES. So we had 3 more kids that dont have it. We decided to have 5th to try to have a girl for my 7 yr old. My 5th and a girl was born with BPES. She didnt open her eyes for 2 wks after she was born. My son opened his the 2nd day he was born. The hospital were they both were born delivered 36,000 children between my son and my daughter. My son and daughter were the only ones that had BPES. She now weres glasses at age 4 for her stigmatisum in her eyes. My 11 son doesnt wear glasses at all. Me and my husband researched back to our great grandparents and no one had anything wrong. I did when I was a kid had one lazey eye. I hope this info helps.- a a J. Crowley blepharophimosis " Good doctors " List I was wondering if we can start a list of good doctors that people would recommend based on personal experience. For us, there are only a couple of pediatric opthamologists locally. We've seen both but still wanted to see more. One was not even patient enough to let me finish my questions. The other is much nicer, but it seems he thinks not being able to fully close eyes after the sling surgery is not abnormal and is kind of the effect of the eyelid lift surgey is supposed to do. We'd like to know if there are good ones in other states (we are in the U.S.) and are willing to try. I think some sort of lists of this nature (regardless of which country the doctor is in) should help to people who just know about the condition and have just started the journey of getting proper surgeries done. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Hi Dawn You are welcome. I have written to the UK association of Oculoplastic Surgeons and have asked them to tell me the best way of getting access to USA surgeons. I am sure that you didn’t meant it the way it sounds, but few randomly pick out a surgeon. My understanding is that people undergo specialist training to become Oculoplastic surgeons. Having done that, they may even have further areas of interest. Let’s wait and see what reply I get …. I am sure that I can find a way of getting the right information. Take care Shireen Mohandes, London, England From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of li.dawn Sent: 16 December 2009 02:51 blepharophimosis Subject: blepharophimosis Re: " Good doctors " List Shireen, Thank you for the suggestions and the various lists you created for each country. I actually did visit the database before I post the original message. As you pointed out, the information on doctors and institutions is limited and sometimes dated. I also took down a few doctor names from that database. Thank you a for giving us your doctor's name. I was about to ask the same question about your two children. The good thing is that you have found a great doctor. With the stats you provided in your message (out of 36,000 babies, your two are the only ones with the condition), I'm now really worried about the experience of a doctor has if we just randomly pick one. Thanks. > > Hi Dawn > > If you visit the web site, click on Database, you'll see a row called " BPES > List " . (take a look at the screenshot below) > > Once you have clicked on that you'll see a database of people and their > surgery information. > > Many people have put the names and surgeons, treatment, and hospitals in > this list already. > > It would be great if people would continue to use this list, and add to it. > > There are 165 names in it already. Our group has 890 people in it . so it > would be good to see some more people adding their details to the list. > > Remember that you can put in as little or as much information as you like. > > If you want to see people in the USA, click the arrow next to country, that > sorts the list in country order, then you can use the scroll bars, and the > " next " and " previous " buttons to reach USA. > > You can also search by the name of the specialist . by putting their name in > the Search box. > > Please take a moment to have a look. > > There is one important thing to consider. > > > > These are the founding principals of the group: > > We encourage you to share your experiences, suggestions or questions with > regard to treatment options or information about BPES. This exchange is > beneficial as part of our on-going education process and assessment of > information about blepharophimosis. > > > > But we discourage endorsing any particular treatment options. We feel that > it is important to facilitate this exchange of information as support for > one another, and to consult your medical specialists for their professional > recommendations. > > > > The best way to find an oculoplastic surgeon is via your doctor, > paediatrician, genetics doctor. > > Alternatively - in the UK you can look here: > http://www.bopss.org/plugins/geo_search/show_geo.php > > I will find out what the equivalent web site is in the USA and post it here. > > I hope that this helps. > > Shireen Mohandes, London, England > > > > > > > > From: blepharophimosis > [mailto:blepharophimosis ] On Behalf Of li.dawn > Sent: 14 December 2009 19:54 > blepharophimosis > Subject: blepharophimosis " Good doctors " List > > > > > > I was wondering if we can start a list of good doctors that people would > recommend based on personal experience. For us, there are only a couple of > pediatric opthamologists locally. We've seen both but still wanted to see > more. One was not even patient enough to let me finish my questions. The > other is much nicer, but it seems he thinks not being able to fully close > eyes after the sling surgery is not abnormal and is kind of the effect of > the eyelid lift surgey is supposed to do. We'd like to know if there are > good ones in other states (we are in the U.S.) and are willing to try. > > I think some sort of lists of this nature (regardless of which country the > doctor is in) should help to people who just know about the condition and > have just started the journey of getting proper surgeries done. > > Thanks. > Quote Link to comment Share on other sites More sharing options...
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