Guest guest Posted February 3, 2005 Report Share Posted February 3, 2005 Hi Welcome to the group. Take a look in the section called " Files " . There is a very good article - the first one. It is packed with information. You may be interested to know that there is a group for Ohdo Blepharophimosis. My friend Pat Seville takes care of that group. If you have limited internet access then send me your postal address and I will mail a copy of the article to you. Take care Shireen (London, England) > > Hello everyone! My four year old daughter has been having some > genetic testing done. The doctor thinks she might have BPES or Ohdo > blepharophimosis syndrome. We have to wait untill she gets tested > through Denmark for a complete diagnosis. I do not know much about > this desease. We started gentic testing because of learning delays. > Is BPES linked to delays? Well I am on a timed computer... If it > takes me a while to reply we don't have internet at home, but i would > appricete the feed back. > Thanks, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 Welcome ! Nice to have a new face. Read or join in, it's whatever you are comfortable with. If you have questions, that's the best, I think. Causes me to dig up some of my material or search for new. Blessings, Joy [ ] Hi! Hi! I was talking to Marty and he gave me an invite to your group. I have excepted.I will answer most questions(with in reason) openly and honestly. I hope to learn alot here and hopefully contribute some myself.Blessings and Love Saffron Meadows Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2007 Report Share Posted November 22, 2007 Hey everybody, lets give my Canadian friend a warm welcome!! I am glad you made it to our group. If you have any thing that is bothering you let us know!! Stompingelk --- MacKenzie <thia_quette@...> wrote: > Hi! I was talking to Marty and he gave me an invite > to your group. I > have excepted. > I will answer most questions(with in reason) openly > and honestly. I > hope to learn alot here and hopefully contribute > some myself. > Blessings and Love Saffron Meadows > > Spiritual freedom is my birthright. I am a free thinker. I am able to rise above mental prejudices and stereotypes of others. I am a free thinker. Nobody and nothing can manipulate me or deceive me. I am a free thinker. I freely choose truth and love. Today, I embrace a greater degree of spiritual freedom. ________________________________________________________________________________\ ____ Never miss a thing. Make your home page. http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2007 Report Share Posted November 29, 2007 In a message dated 11/21/2007 9:45:11 P.M. Eastern Standard Time, thia_quette@... writes: Hi! I was talking to Marty and he gave me an invite to your group. I have excepted.I will answer most questions(with in reason) openly and honestly. I hope to learn alot here and hopefully contribute some myself.Blessings and Love Saffron Meadows Welcome to the group! JaneyAs day ends and night begins to falldoes your soul hear a Wolf's call As Wolf's cry is heard through the darkdoes it stir something within your heartCheck out AOL Money Finance's list of the hottest products and top money wasters of 2007. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2007 Report Share Posted November 30, 2007 > > > > In a message dated 11/21/2007 9:45:11 P.M. Eastern Standard Time, > thia_quette@... writes: > > Hi! I was talking to Marty and he gave me an invite to your group. I > have excepted. > I will answer most questions(with in reason) openly and honestly. I > hope to learn alot here and hopefully contribute some myself. > Blessings and Love Saffron Meadows > HI there how are you? I am glad you joined Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2008 Report Share Posted March 22, 2008 Hi, Group! My name is and I have a 5 year old son with Autism. We live in Mahoning County, in Youngstown. I sent an e-mail earlier but for some reason I don't think it went anywhere. In case it already posted, sorry for the repeat. But I would like to ask a question. My son has an appointment with Dr. DeMio in August (the soonest available). We have never been to a DAN doctor. Does anyone have any advice or suggestions? Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 HI , I am and I have a son who will be 3 in June who has been diagnosed as ASD. He is very high functioning. I live in Trumbull County in Warren. You are probably the only one close to me so far..lol Everyone else tends to be in the Cleveland area. I dont know much about DAN doctors. I recently just met one at a local support group that meets in Niles. I learned a lot from her, but we are new to everything so still learning. Welcome to the group, its nice meeting you! Create a Home Theater Like the Pros. Watch the video on AOL Home. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2008 Report Share Posted April 25, 2008 Hi , Welcome!! I'm 31 and I've not long discovered that I have bleph. It was only when my daughter Imogen was born with it as well that we found a name for it and that I was not the only person in the world with eyes like this. This is such a fantastic site, it is awesome that we can share our stories with each other and know that we are not alone. I was just wondering what country you are from if you had to have a specialist flown in from America? Cheers > > hi evry one i'm new to this site and i suffer from blepharophamosis > and i would love someone to talk to as i have never spoke to anyone > with the condition so it would be graet to talk to someone, hope to > hear from someone soon alex x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2008 Report Share Posted April 28, 2008 Hi im from England and sorry but i got that thing wrong the speciallist wasn't from America he just travels around europe. When i was born my mom says that there was only 6 cases of it but she can't remember weather that was just in England or the world but still thats rare! Ive had quite a few operations iv'e also had one where iv'e had to have fake mucels put in the lids and brows of my eyes as when i was born i couldn't open my eyes and iv'e had other operations aswell. When i was born my mom and dad new something was wrong but the doctors wouldn't have it but to be honest my mom thinks that they just kept sayin i'm fine becuase they had no idea what it was! well im supposed to be having another operation and i don't know weather i should! well i hope to hear from you soon xxx -- In blepharophimosis , " " <claire.haun@...> wrote: > > Hi , > > Welcome!! I'm 31 and I've not long discovered that I have bleph. It was > only when my daughter Imogen was born with it as well that we found a > name for it and that I was not the only person in the world with eyes > like this. > This is such a fantastic site, it is awesome that we can share our > stories with each other and know that we are not alone. > I was just wondering what country you are from if you had to have a > specialist flown in from America? > > Cheers > > > > > > > > > > > > hi evry one i'm new to this site and i suffer from blepharophamosis > > and i would love someone to talk to as i have never spoke to anyone > > with the condition so it would be graet to talk to someone, hope to > > hear from someone soon alex x > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 HI , this is Clare Teale, Hertfordshire, England Me and my 12 year old have BPES. Welcome to this amazing site, it is a great way to talk about BPES and living with it. Where abouts in England are you? We went to Moorfields in London for our operations, we both had muscles put into our eyelids, and then a crease stitched into our eyelid. and other operations too. What is the next operation you spoke about, what will you have done (if you decide to have it done). Look forward to hearing from you soon. Clare - Herts UK alexcollins_1289 <alexcollins_1289@...> wrote: Hi im from England and sorry but i got that thing wrong the speciallist wasn't from America he just travels around europe. When i was born my mom says that there was only 6 cases of it but she can't remember weather that was just in England or the world but still thats rare! Ive had quite a few operations iv'e also had one where iv'e had to have fake mucels put in the lids and brows of my eyes as when i was born i couldn't open my eyes and iv'e had other operations aswell. When i was born my mom and dad new something was wrong but the doctors wouldn't have it but to be honest my mom thinks that they just kept sayin i'm fine becuase they had no idea what it was! well im supposed to be having another operation and i don't know weather i should! well i hope to hear from you soon xxx-- In blepharophimosis , "" <claire.haun@...> wrote:>> Hi ,> > Welcome!! I'm 31 and I've not long discovered that I have bleph. It was > only when my daughter Imogen was born with it as well that we found a > name for it and that I was not the only person in the world with eyes > like this. > This is such a fantastic site, it is awesome that we can share our > stories with each other and know that we are not alone.> I was just wondering what country you are from if you had to have a > specialist flown in from America?> > Cheers> > > > > > > > > >> > hi evry one i'm new to this site and i suffer from blepharophamosis > > and i would love someone to talk to as i have never spoke to anyone > > with the condition so it would be graet to talk to someone, hope to > > hear from someone soon alex x> >> Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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