Guest guest Posted February 25, 2006 Report Share Posted February 25, 2006 Debbie, Raising awareness can only help us, those who have not found us yet and most importantly the general public who do not understand or know about BPES. I have often thought about how to achieve a more general awareness to help to avoid the stares and the inappropriate questions through knowledge. I would be more than willing to help any way I can. I have thought about calling Oprah! LOL......cjberwick3 <cjberwick3@...> wrote: Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@....-- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote:>> Dear Debbie,> I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)> > debbie <westonfrom@...> wrote:> Hello!> > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times "What's wrong with your eyes?" or "Why are your > eyes are so small?" And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact.> If you are interested please post an email.> > Thanks so much!> Debbie> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2006 Report Share Posted February 25, 2006 I have a problem with exposing BPES to the public the reason is that I will no longer be viewed as just unusual anymore and nothing else. When the public are informed I wont be be inconspicuous anymore and it will be harder to fob people off with the idea that I'm oriental. It also makes me concerned that we will finally be labled unfavourably by society which could ultimately lead to more social problems. Beth Mullane <srmrmm@...> wrote: Debbie, Raising awareness can only help us, those who have not found us yet and most importantly the general public who do not understand or know about BPES. I have often thought about how to achieve a more general awareness to help to avoid the stares and the inappropriate questions through knowledge. I would be more than willing to help any way I can. I have thought about calling Oprah! LOL......cjberwick3 <cjberwick3@...> wrote: Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@....-- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote:>> Dear Debbie,> I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)> > debbie <westonfrom@...> wrote:> Hello!> > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times "What's wrong with your eyes?" or "Why are your > eyes are so small?" And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact.> If you are interested please post an email.> > Thanks so much!> Debbie> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2006 Report Share Posted February 25, 2006 I completely don't unstand this at all. I would think people with BPES would want people to understand better and I would think educated people would be more understanding ? Just my opinion. JULIE IKEN <kookie61@...> wrote: I have a problem with exposing BPES to the public the reason is that I will no longer be viewed as just unusual anymore and nothing else. When the public are informed I wont be be inconspicuous anymore and it will be harder to fob people off with the idea that I'm oriental. It also makes me concerned that we will finally be labled unfavourably by society which could ultimately lead to more social problems. Beth Mullane <srmrmm@...> wrote: Debbie, Raising awareness can only help us, those who have not found us yet and most importantly the general public who do not understand or know about BPES. I have often thought about how to achieve a more general awareness to help to avoid the stares and the inappropriate questions through knowledge. I would be more than willing to help any way I can. I have thought about calling Oprah! LOL......cjberwick3 <cjberwick3@...> wrote: Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@....-- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote:>> Dear Debbie,> I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)> > debbie <westonfrom@...> wrote:> Hello!> > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times "What's wrong with your eyes?" or "Why are your > eyes are so small?" And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact.> If you are interested please post an email.> > Thanks so much!> Debbie> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 BPES is too rare! and I don't particularly need understanding from the public. If my nose was one inch longer than a normal persons whose to understand what? There isn't anything to understand we are normal functioning people with different shaped eyes so what? and yes more sadly poor eye sight and fertility problems can occur as in type 1 and I have type 1. Even so I don't particular want or need peoples sympathy. However to prevent the psychological affects of teasing from school kids I'm all for mums and dads getting out there and involving the teachers/kids. It's my personal stuff and that's how I would like it to stay and I don't owe anyone an explanation for the way I look. Sorry to those who feel offended or angered by my opnions regarding public exposure of BPES. From julie Sharon A <besilly12000@...> wrote: I completely don't unstand this at all. I would think people with BPES would want people to understand better and I would think educated people would be more understanding ? Just my opinion. JULIE IKEN <kookie61@...> wrote: I have a problem with exposing BPES to the public the reason is that I will no longer be viewed as just unusual anymore and nothing else. When the public are informed I wont be be inconspicuous anymore and it will be harder to fob people off with the idea that I'm oriental. It also makes me concerned that we will finally be labled unfavourably by society which could ultimately lead to more social problems. Beth Mullane <srmrmm@...> wrote: Debbie, Raising awareness can only help us, those who have not found us yet and most importantly the general public who do not understand or know about BPES. I have often thought about how to achieve a more general awareness to help to avoid the stares and the inappropriate questions through knowledge. I would be more than willing to help any way I can. I have thought about calling Oprah! LOL......cjberwick3 <cjberwick3@...> wrote: Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@....-- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote:>> Dear Debbie,> I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)> > debbie <westonfrom@...> wrote:> Hello!> > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times "What's wrong with your eyes?" or "Why are your > eyes are so small?" And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact.> If you are interested please post an email.> > Thanks so much!> Debbie> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 I understand how you feel. I know I am completely different to everyone else, and always enjoy it. However, this is not just to do with my eyes. All my friends and family have always said there is no-one else in the world anything like me. So, I believe, we can still be completely different, if we want to. I do think though we need to educate as many people as possible, as I think this is the way forward, with my memories and understanding what my daughter went through. However the world is a pretty big place!! I think my bright pink glasses, my large frame, my huge smile, my brain (that never stops having ideas and how else things can work) and of course a great big hurty laugh may have something to do with this. Lets face it if we were all the same, life would be pretty boring. We doing great at this 'talking' thing....lets keep going... Love to all Clare Teale JULIE IKEN <kookie61@...> wrote: I have a problem with exposing BPES to the public the reason is that I will no longer be viewed as just unusual anymore and nothing else. When the public are informed I wont be be inconspicuous anymore and it will be harder to fob people off with the idea that I'm oriental. It also makes me concerned that we will finally be labled unfavourably by society which could ultimately lead to more social problems. Beth Mullane <srmrmm@...> wrote: Debbie, Raising awareness can only help us, those who have not found us yet and most importantly the general public who do not understand or know about BPES. I have often thought about how to achieve a more general awareness to help to avoid the stares and the inappropriate questions through knowledge. I would be more than willing to help any way I can. I have thought about calling Oprah! LOL......cjberwick3 <cjberwick3@...> wrote: Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@....-- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote:>> Dear Debbie,> I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)> > debbie <westonfrom@...> wrote:> Hello!> > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times "What's wrong with your eyes?" or "Why are your > eyes are so small?" And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact.> If you are interested please post an email.> > Thanks so much!> Debbie> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Hey , just read you 2nd mail. Absolutely you are completely and utterly entitled to feel exactly the way you want to, its your BPES. The thing with people and BPES, that I see, is that people get quite emotional (me included - on occassion) about the issue, for lots of reasons, own experience, children's experience etc etc. Before I had children having BPES was not really an issue to me, I was a little angry and looking slightly different to my friends, but no-one would have known. My friends I would explain to, the others would tease etc, pick holes and bully me, but probably not any more than the others, and for different reasons. My parents never talked about it. Then I had emy my daughter, not only did I have to deal with her having BPES It bought back a whole load of issues that I didnt even realise existed. Anyway the whole reason for all of this is that we all have different experiences, and have different emotions, and of course are different people. So we are all intitled to react in whatever way works for us. For some us though we not really sure how to react or feel and the way we are dealing with situations are not right, thats when we need to learn from everyone's experience on this site. It is certainly helping me. Regards Clare JULIE IKEN <kookie61@...> wrote: BPES is too rare! and I don't particularly need understanding from the public. If my nose was one inch longer than a normal persons whose to understand what? There isn't anything to understand we are normal functioning people with different shaped eyes so what? and yes more sadly poor eye sight and fertility problems can occur as in type 1 and I have type 1. Even so I don't particular want or need peoples sympathy. However to prevent the psychological affects of teasing from school kids I'm all for mums and dads getting out there and involving the teachers/kids. It's my personal stuff and that's how I would like it to stay and I don't owe anyone an explanation for the way I look. Sorry to those who feel offended or angered by my opnions regarding public exposure of BPES. From julie Sharon A <besilly12000@...> wrote: I completely don't unstand this at all. I would think people with BPES would want people to understand better and I would think educated people would be more understanding ? Just my opinion. JULIE IKEN <kookie61@...> wrote: I have a problem with exposing BPES to the public the reason is that I will no longer be viewed as just unusual anymore and nothing else. When the public are informed I wont be be inconspicuous anymore and it will be harder to fob people off with the idea that I'm oriental. It also makes me concerned that we will finally be labled unfavourably by society which could ultimately lead to more social problems. Beth Mullane <srmrmm@...> wrote: Debbie, Raising awareness can only help us, those who have not found us yet and most importantly the general public who do not understand or know about BPES. I have often thought about how to achieve a more general awareness to help to avoid the stares and the inappropriate questions through knowledge. I would be more than willing to help any way I can. I have thought about calling Oprah! LOL......cjberwick3 <cjberwick3@...> wrote: Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@....-- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote:>> Dear Debbie,> I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)> > debbie <westonfrom@...> wrote:> Hello!> > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times "What's wrong with your eyes?" or "Why are your > eyes are so small?" And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact.> If you are interested please post an email.> > Thanks so much!> Debbie> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 , I totally understand now your way of seeing it...and can agree I don't want sympathy for my children either. Because they look different than I people wonder why, If I were Asian they probably wouldn't have a second thought. I have been told many times with the baby " what beautiful eyes she has" hope she gets this compliment all her life instead of the constand questions. Be well, Sharon JULIE IKEN <kookie61@...> wrote: BPES is too rare! and I don't particularly need understanding from the public. If my nose was one inch longer than a normal persons whose to understand what? There isn't anything to understand we are normal functioning people with different shaped eyes so what? and yes more sadly poor eye sight and fertility problems can occur as in type 1 and I have type 1. Even so I don't particular want or need peoples sympathy. However to prevent the psychological affects of teasing from school kids I'm all for mums and dads getting out there and involving the teachers/kids. It's my personal stuff and that's how I would like it to stay and I don't owe anyone an explanation for the way I look. Sorry to those who feel offended or angered by my opnions regarding public exposure of BPES. From julie Sharon A <besilly12000@...> wrote: I completely don't unstand this at all. I would think people with BPES would want people to understand better and I would think educated people would be more understanding ? Just my opinion. JULIE IKEN <kookie61@...> wrote: I have a problem with exposing BPES to the public the reason is that I will no longer be viewed as just unusual anymore and nothing else. When the public are informed I wont be be inconspicuous anymore and it will be harder to fob people off with the idea that I'm oriental. It also makes me concerned that we will finally be labled unfavourably by society which could ultimately lead to more social problems. Beth Mullane <srmrmm@...> wrote: Debbie, Raising awareness can only help us, those who have not found us yet and most importantly the general public who do not understand or know about BPES. I have often thought about how to achieve a more general awareness to help to avoid the stares and the inappropriate questions through knowledge. I would be more than willing to help any way I can. I have thought about calling Oprah! LOL......cjberwick3 <cjberwick3@...> wrote: Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@....-- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote:>> Dear Debbie,> I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)> > debbie <westonfrom@...> wrote:> Hello!> > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times "What's wrong with your eyes?" or "Why are your > eyes are so small?" And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact.> If you are interested please post an email.> > Thanks so much!> Debbie> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Sharon, kids will ask questions it's natural and as we know some will mock what they fear if it doesn't fit into thier idea of 'normal'. The majority of adults tend to be more accepting of the fact that not everyone in life is made the same way and will be more polite and less out spoken. For those insensitive so called grown ups that you don't care to share your daughter's problem with be assertive and don't allow yourself to get drawn in. Kind regards from Sharon A <besilly12000@...> wrote: , I totally understand now your way of seeing it...and can agree I don't want sympathy for my children either. Because they look different than I people wonder why, If I were Asian they probably wouldn't have a second thought. I have been told many times with the baby " what beautiful eyes she has" hope she gets this compliment all her life instead of the constand questions. Be well, Sharon JULIE IKEN <kookie61@...> wrote: BPES is too rare! and I don't particularly need understanding from the public. If my nose was one inch longer than a normal persons whose to understand what? There isn't anything to understand we are normal functioning people with different shaped eyes so what? and yes more sadly poor eye sight and fertility problems can occur as in type 1 and I have type 1. Even so I don't particular want or need peoples sympathy. However to prevent the psychological affects of teasing from school kids I'm all for mums and dads getting out there and involving the teachers/kids. It's my personal stuff and that's how I would like it to stay and I don't owe anyone an explanation for the way I look. Sorry to those who feel offended or angered by my opnions regarding public exposure of BPES. From julie Sharon A <besilly12000@...> wrote: I completely don't unstand this at all. I would think people with BPES would want people to understand better and I would think educated people would be more understanding ? Just my opinion. JULIE IKEN <kookie61@...> wrote: I have a problem with exposing BPES to the public the reason is that I will no longer be viewed as just unusual anymore and nothing else. When the public are informed I wont be be inconspicuous anymore and it will be harder to fob people off with the idea that I'm oriental. It also makes me concerned that we will finally be labled unfavourably by society which could ultimately lead to more social problems. Beth Mullane <srmrmm@...> wrote: Debbie, Raising awareness can only help us, those who have not found us yet and most importantly the general public who do not understand or know about BPES. I have often thought about how to achieve a more general awareness to help to avoid the stares and the inappropriate questions through knowledge. I would be more than willing to help any way I can. I have thought about calling Oprah! LOL......cjberwick3 <cjberwick3@...> wrote: Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@....-- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote:>> Dear Debbie,> I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)> > debbie <westonfrom@...> wrote:> Hello!> > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times "What's wrong with your eyes?" or "Why are your > eyes are so small?" And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact.> If you are interested please post an email.> > Thanks so much!> Debbie> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 Beth, I'm the only one in my family with BPES knowone on either side of the family has seen it before. I can understand that social difficulties would be enhanced by a family like yours who have seen BPES repeat itself. From what I understand it is highly inheritable which of course leads to many questions especially in something so rare amonst the general population. Don't get me wrong I'm all for further research in this area,for improved diagnosis more knowledgable professionals and more sophisticated surgery. bethgordon03 <bethgordon03@...> wrote: I kind of understand what you are saying, but I think you should realize that even if this documentary aired on CNN, it doesn't mean everyone would know what it is and understand it. I don't think you would likely be affected in your daily life, you could still say you are Asian if you prefer it that way.I look at it this way, something like cleft palate is SO COMMON. If I told people my daughter had a cleft palate, that would be it, end of story, everyone knows what that is, end of story. But with BPES, no one gets it, you can explain it over and over and people really don't understand it, truly, I am still learning and it's been in my family for 100 years!> > Hello!> > > > I am a long time member of this group and enjoy reading and > > occasionally contributing to the email postings. > > My daughter, Hannah, was born with BPES in 2000. Just recentely > two > > college friends approached my husband and I about doing a > > documentary about the social implications of having BPES. What I > > mean is how people question you or your child. Hannah has been > > asked numerous times "What's wrong with your eyes?" or "Why are > your > > eyes are so small?" And I was also accused of poor prenatal care. > > The biggest goal of their project is to educate people and to make > > the documentary available for free distribution. Melody and > Gwenith > > are eager to network with others from around the world who are > > interested in this project. They would love to speak with people > > with a family history of BPES and those without. > > I know that there may be some people who will be upset by this and > > it is in no way suggesting that there is anything wrong with having > > BPES. These two young students are merely interested in raising > > awareness about BPES and making a positive impact.> > If you are interested please post an email.> > > > Thanks so much!> > Debbie> > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 My family in no way has social probelms ...if anything my kids are way too social :-) bethgordon03 <bethgordon03@...> wrote: It is an autosomal dominant trait, that means it is a dominant gene, you would have a 50/50 chance of passing it on. I understand you aren't having children so you aren't concerned about how you would manage it. I am slightly confused by your message. My family doesn't have a social problem, yes 3 different people of 3 different generations have BPES. Right now it is an issue for my 18 month old, as it was for me when I was of the same age. My point was, if more people understood BPES, there wouldn't be a need for me to feel tired and sad sometimes about explaining it to people, or possibly there wouldnt' be a need for you to tell people you are Asian, when I am assuming you are not.> > > Hello!> > > > > > I am a long time member of this group and enjoy reading and > > > occasionally contributing to the email postings. > > > My daughter, Hannah, was born with BPES in 2000. Just recentely > > two > > > college friends approached my husband and I about doing a > > > documentary about the social implications of having BPES. What I > > > mean is how people question you or your child. Hannah has been > > > asked numerous times "What's wrong with your eyes?" or "Why are > > your > > > eyes are so small?" And I was also accused of poor prenatal > care. > > > The biggest goal of their project is to educate people and to > make > > > the documentary available for free distribution. Melody and > > Gwenith > > > are eager to network with others from around the world who are > > > interested in this project. They would love to speak with > people > > > with a family history of BPES and those without. > > > I know that there may be some people who will be upset by this > and > > > it is in no way suggesting that there is anything wrong with > having > > > BPES. These two young students are merely interested in raising > > > awareness about BPES and making a positive impact.> > > If you are interested please post an email.> > > > > > Thanks so much!> > > Debbie> > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 Dear Debbie I do feel education is the way forward and I as well as my family would be more than happy to contribute if needed to the interview. Hi everyone,I have not been on for a while very busy ( doing what I dont know just a parent I think). I have now had referred to Mr Colin at Morrfields as I have no confidence in our consultant hear,just awaiting an apptionment,will let you know. Hope everyone is well,take care and (whom has little sight but BIG terrible twos)cjberwick3 <cjberwick3@...> wrote: Dear Debbie: I would really be intrested in helping with the documentary. My Father-in-law, my husband and my son all have BPES. Please let me know more. I have another email address cjberwick@....-- In blepharophimosis , Terry Helgestad <terryahelge@...> wrote:>> Dear Debbie,> I would be interested in the documentary about BPES. My daughter, (20), is the first one on all sides of our family who has it. Please let me know more. Thank you. Very Sincerely, Terry ('s mom)> > debbie <westonfrom@...> wrote:> Hello!> > I am a long time member of this group and enjoy reading and > occasionally contributing to the email postings. > My daughter, Hannah, was born with BPES in 2000. Just recentely two > college friends approached my husband and I about doing a > documentary about the social implications of having BPES. What I > mean is how people question you or your child. Hannah has been > asked numerous times "What's wrong with your eyes?" or "Why are your > eyes are so small?" And I was also accused of poor prenatal care. > The biggest goal of their project is to educate people and to make > the documentary available for free distribution. Melody and Gwenith > are eager to network with others from around the world who are > interested in this project. They would love to speak with people > with a family history of BPES and those without. > I know that there may be some people who will be upset by this and > it is in no way suggesting that there is anything wrong with having > BPES. These two young students are merely interested in raising > awareness about BPES and making a positive impact.> If you are interested please post an email.> > Thanks so much!> Debbie> > > > > > To Post a message, send it to: blepharophimosis@...> > To Unsubscribe, send a blank message to: blepharophimosis-unsubscribe@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2011 Report Share Posted March 26, 2011 Hi Bee and Others, I've been wondering about the info that raw vegies are not good. I know for myself if they are not cooked, then I can't digest them very well. Why is it that the Gerson Therapy or other similar treatments have success treating cancer, since their protocol is focused on so much raw produce? And wouldn't all those " carbs " be feeding the cancer? Can someone enlighten us? By the way, I asked some questions about a swollen lymph node a month back and the dr. diagnosed it this week as a protruding muscle, not a lymph node or a tumor. So, thanks Bee, I had done the hot wet packs, but am relieved it's not what I thought. Thanks:) Marti > > A friend of mine showed me a documentary called " Food Matters " you can get it on Netflix. It surprised me that a Molecular Biologist said that cancer is the bodies way of healing it's self...the same thing Bee says....but another nutritionist or biologist...can't remember says that everytime we eat cooked veggies, our body recognizes it as a forgein matter and send out white blood cells....the body doesn't do that with raw veggies.....Do you know anything about that statement Bee? +++Hi Gail, The other nutritionist got it wrong since cooking vegetables releases the nutrients locked behind plant cell walls (fibers, called cellulose that humans cannot digest) as this article explains: http://www.healingnaturallybybee.com/articles/veg3.php Bee Quote Link to comment Share on other sites More sharing options...
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