RE: Looking for an optometrist/surgeon in my area...

[Guest guest]

Hey Sydney,

My 16 year old daughter has had six surgeries by a world renowned ophthalmic plastic surgeon in New York City. His name is Dr. Lisman.

D. Lisman M.D.

He is a doctor that sees many new cases of BPES a year and is very experienced. Good Luck

In a message dated 9/14/2006 4:11:54 A.M. Eastern Standard Time, xmissvixenx@... writes:

Hi everyone,I've been a part of this group only for a week or so and I've justbeen observing, but now I'm really hoping that someone somewhere couldhelp me out. I've been dealing with having BPES my whole life, butafter waking up one morning with yet another eye infection that mademy face swell and left me bedridden for a day, I finally lost it. Thatwas when I joined this group; I decided to post for help because Ihave another swollen eye today. I'm 22 and I have BPES and I live in avery rural area of New York state, and I can't seem to find any doctorwho can actually treat me. I don't know where to even begin when itcomes to finding a doctor, and I thought maybe someone in this groupcould help. I already had three surgeries when I was a baby, and thenone more when I was 12. I don't really know what all of them were for.I had one that removed a muscle from my leg and put it into my eyelids(it failed) and then other ones to fix my tear ducts. I've been leftwith eyes that I cover in makeup, and eyes that I have not been ableto close in over twenty years. Because I can't close my eyes, I getregular eye infections that leave me completely disabled for a day. Idon't know what to do! I've had the help of my mother throughout allof this, and she is very willing to come with me (no matter how far)to any doctor I can find to help me get treatment (be it surgeries oreven a doctor that just understands the condition). I don't know howto find a doctor, though. I need someone who can treat a post-surgeryadult and who can hopefully recommend me to a surgeon to try and fixwhatever needs to be fixed so that I can function every day. I live inthe corner of New York right up by Canada and Vermont, so I'm prettyfar from everything. I had a decent doctor in Albany, but he wasn'thopeful about my condition at all; I want to be able to go to a doctorwho thinks that there is something that can help me. I'm so frustratedthat I have to live with the ridicule and questions and stares, but tobe in pain almost every day is even worse. If anyone can just point mein the right direction, it would be wonderful. I just don't know whereto go from here.Thank you all,Sydney

[Guest guest]

hi sydney, so sorry to hear all of your troubles, however you have come to the right place, there are many a people on this site with various degrees of BPES and people that use many different doctors.

im not sure if i can help you myself because we live in edmonton alberta canada. ....we have a wonderful doctor here that specializes in BPES, however i see that you are on the opposite coast....... i do know of 2 families for sure that see a great doctor in toronto.............anyway i just wanted to say welcome to the group and hopefully someone will be able to lead you in the right direction.

always

tonikka. mother to lynden (age 8) only one with bpes

Tonikka and Chris

-----Original Message-----From: blepharophimosis [mailto:blepharophimosis ]On Behalf Of tragedymaeSent: September 13, 2006 7:12 PMblepharophimosis Subject: blepharophimosis Looking for an optometrist/surgeon in my area...

Hi everyone,I've been a part of this group only for a week or so and I've justbeen observing, but now I'm really hoping that someone somewhere couldhelp me out. I've been dealing with having BPES my whole life, butafter waking up one morning with yet another eye infection that mademy face swell and left me bedridden for a day, I finally lost it. Thatwas when I joined this group; I decided to post for help because Ihave another swollen eye today. I'm 22 and I have BPES and I live in avery rural area of New York state, and I can't seem to find any doctorwho can actually treat me. I don't know where to even begin when itcomes to finding a doctor, and I thought maybe someone in this groupcould help. I already had three surgeries when I was a baby, and thenone more when I was 12. I don't really know what all of them were for.I had one that removed a muscle from my leg and put it into my eyelids(it failed) and then other ones to fix my tear ducts. I've been leftwith eyes that I cover in makeup, and eyes that I have not been ableto close in over twenty years. Because I can't close my eyes, I getregular eye infections that leave me completely disabled for a day. Idon't know what to do! I've had the help of my mother throughout allof this, and she is very willing to come with me (no matter how far)to any doctor I can find to help me get treatment (be it surgeries oreven a doctor that just understands the condition). I don't know howto find a doctor, though. I need someone who can treat a post-surgeryadult and who can hopefully recommend me to a surgeon to try and fixwhatever needs to be fixed so that I can function every day. I live inthe corner of New York right up by Canada and Vermont, so I'm prettyfar from everything. I had a decent doctor in Albany, but he wasn'thopeful about my condition at all; I want to be able to go to a doctorwho thinks that there is something that can help me. I'm so frustratedthat I have to live with the ridicule and questions and stares, but tobe in pain almost every day is even worse. If anyone can just point mein the right direction, it would be wonderful. I just don't know whereto go from here.Thank you all,Sydney

[Guest guest]

, thank you so much for that referral. As I said, I'm in upstate

New York which is about six hours from the city, but I don't mind

travelling at all, especially because my mother is so willing to come

with me. I'm going to contact that doctor ASAP to see if there's

anything he can do, or if he can refer me to someone. I was wondering,

though, did your daughter have her surgeries as a child, or when she

was older? And can she close her eyes? I realize I may be having high

hopes that there's something that can be done because I already have

had the necessary surgeries, but all I want to be able to do is close

my eyes. I already look funny, and I feel like it can't get any worse,

so I guess I'm willing to try anything. Anyhow, thank you for the

help. I'll be sure to keep you updated on my contact with Dr. Lisman.

Thanks,

Sydney

>

>

>

> Hey Sydney,

>

> My 16 year old daughter has had six surgeries by a world

renowned

> ophthalmic plastic surgeon in New York City. His name is Dr.

Lisman.

> _ D. Lisman M.D._

(http://www.med.nyu.edu/clinician/lismar01.html)

> He is a doctor that sees many new cases of BPES a year and is very

> experienced. Good Luck

>

>

>

>

> In a message dated 9/14/2006 4:11:54 A.M. Eastern Standard Time,

> xmissvixenx@... writes:

>

>

>

>

> Hi everyone,

>

> I've been a part of this group only for a week or so and I've just

> been observing, but now I'm really hoping that someone somewhere could

> help me out. I've been dealing with having BPES my whole life, but

> after waking up one morning with yet another eye infection that made

> my face swell and left me bedridden for a day, I finally lost it. That

> was when I joined this group; I decided to post for help because I

> have another swollen eye today. I'm 22 and I have BPES and I live in a

> very rural area of New York state, and I can't seem to find any doctor

> who can actually treat me. I don't know where to even begin when it

> comes to finding a doctor, and I thought maybe someone in this group

> could help. I already had three surgeries when I was a baby, and then

> one more when I was 12. I don't really know what all of them were for.

> I had one that removed a muscle from my leg and put it into my eyelids

> (it failed) and then other ones to fix my tear ducts. I've been left

> with eyes that I cover in makeup, and eyes that I have not been able

> to close in over twenty years. Because I can't close my eyes, I get

> regular eye infections that leave me completely disabled for a day. I

> don't know what to do! I've had the help of my mother throughout all

> of this, and she is very willing to come with me (no matter how far)

> to any doctor I can find to help me get treatment (be it surgeries or

> even a doctor that just understands the condition). I don't know how

> to find a doctor, though. I need someone who can treat a post-surgery

> adult and who can hopefully recommend me to a surgeon to try and fix

> whatever needs to be fixed so that I can function every day. I live in

> the corner of New York right up by Canada and Vermont, so I'm pretty

> far from everything. I had a decent doctor in Albany, but he wasn't

> hopeful about my condition at all; I want to be able to go to a doctor

> who thinks that there is something that can help me. I'm so frustrated

> that I have to live with the ridicule and questions and stares, but to

> be in pain almost every day is even worse. If anyone can just point me

> in the right direction, it would be wonderful. I just don't know where

> to go from here.

>

> Thank you all,

>

> Sydney

>

[Guest guest]

Hi Sydney, I live in Ontario. My seventeen year old son Tyler and I both have BPES and we have both had surgery done by Dr. Pashby, who is based in Toronto. He also has a lot of experience with BPES and works as a surgeon at both Toronto General Hospital and the Hospital for Sick Children. I know you already got a referral to someone in New York but if you are interested in Dr. Pashby his telephone number is (416) 441-1313. Best of luck to you, tragedymae <xmissvixenx@...> wrote: Hi everyone,I've been a part of this group only for a week or so and I've justbeen observing, but now I'm really hoping that someone somewhere couldhelp me out. I've been dealing with having BPES my whole life, butafter waking up one morning with yet another eye infection that mademy face swell and left me bedridden for a day, I finally lost it. Thatwas when I joined this group; I decided to post for help because Ihave another swollen eye today. I'm 22 and I have BPES and I live in avery rural area of New York state, and I can't seem to find any doctorwho can actually treat me. I don't know where to even begin when itcomes to finding a doctor, and I thought maybe someone in this groupcould help. I already had three surgeries when I was a baby, and thenone more when I was 12. I don't really know what all of them were for.I had one that removed a muscle

from my leg and put it into my eyelids(it failed) and then other ones to fix my tear ducts. I've been leftwith eyes that I cover in makeup, and eyes that I have not been ableto close in over twenty years. Because I can't close my eyes, I getregular eye infections that leave me completely disabled for a day. Idon't know what to do! I've had the help of my mother throughout allof this, and she is very willing to come with me (no matter how far)to any doctor I can find to help me get treatment (be it surgeries oreven a doctor that just understands the condition). I don't know howto find a doctor, though. I need someone who can treat a post-surgeryadult and who can hopefully recommend me to a surgeon to try and fixwhatever needs to be fixed so that I can function every day. I live inthe corner of New York right up by Canada and Vermont, so I'm prettyfar from everything. I had a decent doctor in Albany, but he

wasn'thopeful about my condition at all; I want to be able to go to a doctorwho thinks that there is something that can help me. I'm so frustratedthat I have to live with the ridicule and questions and stares, but tobe in pain almost every day is even worse. If anyone can just point mein the right direction, it would be wonderful. I just don't know whereto go from here.Thank you all,Sydney

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