Guest guest Posted July 7, 2006 Report Share Posted July 7, 2006 Hi all Just wanted to let you know that you can create a report of all the members in your country, or nearby. Here is an example for USA. If you fancy arranging a get-together, it can be really useful. Regards Shireen ps - just to let you know that there 470 members in our group. Of which 122 have chosen to put information about themselves in this database (and therefore appear in the listing). Name Email Address & City State Country People in my family with BPES Year of birth / Gender Surgery information Would like to meet others in area My ID for Messenger Robin nascar9118aol byron GA USA only 1 my son devin 1998 / Male Devin had three skin graphs surgeries at age 3 and 4yrs and he had slings at age 5yrs by Dr. Wojno in Atlanta, ga. yes robinlsmith4 Melisa Harp MyHonebee@aol 1377 Montague Road, Highlandville MO 65669 USA 24 year old son and his father 1981-male, 1956-male my son had 2 surgeries at 4 and 6 months old, one to clip the inner and outer edges of eye openings and the second one to suture his eye lids open. He also had surgeries to try and correct strabismus at the age of 2 but still has a lazy eye, identical to his fathers. Would be interested in communicating with others in area. MyHoneBee Cheryl Vahl cheryl-vahluiowa (DOT) edu Iowa City Iowa USA , daughter 1983, female yes Debbie westonfrom Cleveland GA USA Daughter-Hannah Sage 2000/female frontal slings at 9 weeks old yes Amy Bradshaw amybrms Newport TN USA My daughter , she is the first 2005/Female lid lift 1-13-06 yes Huffman angie_huffman Shepherdsville Kentucky 40165 USA dhhughesglobalhealthnetwork (DOT) org 3604 Hendrick Dr, Plano TX USA home phone: 972-943-0588; work phone 972-943-0588 Pam O'Brien obriengroupaol 9537 Cobblestone Drive, Clarence New York 14031 USA Home: 716 759 1734 Work: 716 759 1734 Terry A. Helgestad terryahelge 726 W. Ladd Lane, Edgerton WI 53534 USA Ginny Harper gharper05 Heber Springs AR USA 1 daughter 1999 / Female 1st surgery at 3 1/2 yrs. (transnasal wiring) 2nd surgery at 5 yrs. lid suspension using fasia tissue harvested from her leg. No complications with either surgery. Yes Tawnya Carvalho CO USA One Female None Yes mtcarvsophia Charlotte Nordstrom charnordstromaol Minneapolis MN USA son, daughter, sister, father, grandfather, great-grandmother 1964/F sling and epicanthal surgeries at 6 and 8 years; son Nils had sling surgeries at 6 months and 5 years, daughter Ebba at 7 months yes Lorri lcampagna3 Alturas CA USA 2 1961 Female 4 when before age 12, my daughter has had 2 before age 6 email please Holmes kimholmes2005 upstate New York USA 1 my daughter McKenzie - no others confirmed 2005/Female 1st to be done at age 1 Yes / from anywhere Nina asadoorian nma420comcast (DOT) net PA USA 1 daughter 2002 / Female Noonnaanayaol CA USA My daughter only 2001 / Female Dr Stuart Seiff UCSF Slings for ptosis Yes deb_barfoothotmail Raleigh NC USA just 2003 / Male Fairfax, VA former DC Chidren's Hospital Opthalmologist - 1st frontalis suspension @3mos old, 2nd @8 mos old (due to growth), Duke University Ped. Eye Center - 3rd @ 2.8 y.o. to remove right sling (due to rejection of material - stay away from Ptosept! yes Loretta son annaloretta17692 WA USA 3 1955 I am female.......1 sister has BPES & Father deceased had BPES Eye Foundation Hospital 1720 8th Ave. Birminham Alabama "Alston Callahan" in the 1960's yes I dont have one L. Logan llogan2hotmail Delta OH USA 2 Myself and son Dylan (2001) 1970 / Female Yes llogan21170 Snellback snellsheinaol Wilmette IL USA only 2001 / Male Surgical VSD repair @ 4.5 months;canthoplasty/canthoplexy @ 3 years Sure! snellshein April nomeat (DOT) org odenton MD USA myself 1979 / Female two when i was very young (under 3) Yes Michele shellv@....com Dayton OH USA only myself 1969/F 2 surguries, one in 1974 and one in1975. Dr. Burns, Columbus Ohio. Still practicing there. He used muscle for my eyes from a tissue donor.Should have had one more surgury as a teen, but never went back to recently, because my right eye is weakening. yes Mason bnbbrethouwer Madison WI USA only one 1999/Male 2 surgeries: slings at 10 weeks old (Aug. 1999) and transnasal wiring at age 4 1/2 yrs.(Feb. 2004) A third surgery is scheduled to redo slings this summer (age 5.) definitely bnbbrethouwer Ruth jricard5 Billerica MA USA Ruth is the first 2003/female yes jricard5 Arlene Varela arlenevarelamsn Canton GA USA Only Me 1974/Female I have had 4 reconstructive surgeries, the first at 1YO, the last at 14YO Yes! strangelene Brock McNatt mcnattellijay Ellijay GA USA 1 son 1999/male frontalis sling at 2months, again at 3y/o yes kim_mcnatt Loverde Suwanee GA USA none 2003/ Female none yet Yes seloverde boydgitrinity-health (DOT) org MI USA 2, myself and my father, which I have never met. Possibly more 1963, female ages: 5, 17, 19. Last two surgeries performed @ U of Michigan 20+ years ago yes mcauley9822000 Dalia daliabenhotmail Great Neck NY USA Me [my 2 brothers, dad, 2 aunts, grandfather and his sister, and great grandfather who was the first to exhibit this gene.) 1979 Female When I was around 20ish, I had 2 surgeries. The first was to open the inner eyelid (blepharophimosis). The second was to lift the eyelid (ptosis). I never did the 3rd surgery which was for the lower lid, which i thought was unnessary. Yes Not available, please email me - Thank you! Darryl Ytsefanaol Orlando FL USA 1-just me 12/18/03 male 1st surgery at 5 weeks, need adjustment done sometime in Oct. 2004 Yes 8ll Beth Gordon bethgordon03 Purcellville VA USA my infant daughter, my father, my grandfather and me 1970/female, 2004/female I had ptosis & epicanthus surgeries between 1971-1974, my daughter has slings at this time, Children's Hospital, DC yes Kerry fishingmom2hotmail or mamajoex2 Riverside CA USA My Daughter (considered new mutation) -- AnaLia 2000/Female Possibly summer of 2005 yes Conner goozle71 St. Louis MO USA just me 2002/ male none yes Aedan Schoen - (Mom = ) Rainamintaol New York New York 10011 USA Aedan is our one and only 2002 Male Ptosis surgury at 10 weeks YES Hannah Rae angie_huffman Shepherdsville Kentucky USA Father-Jon 2004/Female None yet YES mfeichtnercinci (DOT) rr.com OH USA 8+ 1971 / Female I had 2 surgeries as a child. One in 1975 & one in 1976. They were both done by Dr. Jansen in Cincinnati, Ohio. My oldest son had 2 surgeries both performed by Dr. Kulwin at the Cincinnat Eye Institute. My youngest has had a total of 3 surgeries as of this date. He had a temporary suture sling done in 1998 when he was 4 months old. In 2001 he another sling surgery done. August of 2003 he had the epicanthal surgery all of which were done by Dr.Kulwin. Yes don't have Mess. AOL ID is MRF871 Lily lily_boglesil (DOT) org NC USA Father, 2 sisters (one with POF), 1 nephew Yes Rob Hall rnhall180sbcglobal (DOT) net Round Rock TX USA myself, mom, grand mother + 3 of her 4 sisters, great grand father 1973/ male none yes travisrobhall Harry dawnreading-connections Maple Valley WA USA is the first 1998/female 1st- age 4: canthopexies to increase the horizontal width and attach inner and outer corners to bones; 2nd at age 5: frontalis sling for ptosis and second attempt to attach outer corners; 3rd at age 5: skin graft to add more skin to the lower lids; 4th at age 6: revision of skin graft scar line; re-do right eye frontalis sling Yes! DAWN KORBINTAI2LUVAOL (DOT) COM LAS VEGAS NEVADA USA MY DAUGTHER 2-26-03 3 SURGERIES TO DATE YES WOULD LOVE TO~ TAILYNN03 Mulvaney chatthisway Rochester Washington USA Kennth Mulvaney 99/male none yes chatthisway Leindecker Rozrabbitcs Lenhartsville PA USA 1-Daughter 1999 / Female Yes Rozrabbit99 Ball maryberryprincesaol ft lauderdale Fl USA myself and my son Charlie mary1979 charlie2004 I had operations but my son will start in october yes maryelisabethball Rae Ann moesgirl35aol 3612 Allview Circle, Cincinnati Ohio 45238 USA Son, 2004, boy Sling surgery Feb 2004 yes Work phone: 513-502-0102 Amy Hinchman mamahinch West Mifflin PA USA My daughter 2004/F none yes mamahinch Eisele Family - Jon, April, Mira, Micah, Misha aprileisele Colorado USA Micah 2002/Male 1 surgery - YV canthoplasty and frontalis sling with silicone rods Yes aprileisele How reneehow Palo Alto CA USA Husband (Dana), Son (Cameron) 1966/male, 2004/male 4 surgeries in late 60's, none Yes reneehow Kent W. Small, M.D. small@....edu Los Angeles CA USA none but currrently doing research on genetics of BPES, please contact me if you want to participate 1956 / Male yes Kim Beaver kbeavercomcast (DOT) net Tuscumbia Alabama USA Husband, Daughter, and husband's two children from previous marriage Female two surgeries for Jordan yes kbeav94 Sharon Besilly12000 Holtsville, New York USA Grandpa, Husband, 2 sons, 1 daughter m 1991, m 1994, f 6/6/05 would love to meet others...give me a shout ! McManus juliecheese99 Midland MI USA just me 1983 / female at ages 2 1/2 and 6 sure cheese is my AIM name Sharon Ancilleri Besilly12000 Holtsville New York USA Granfather,Sister, Father, 2 Sons, 1 Dauther KIDS: 1991, 1994, 2005 email me ...it is many ...all 3 kids have had several YES!!!!!! Crystal Berwick cjberwicknetzero Clearlake CA USA Son, Husband, Father-law 2004, Male Lacimal duct,YV Canthoplasty YES crytalskitle Mieritz, Malenah's Mom Mieritzjuno 2377 S. Summit Cir. Glen, Escondido CA 92026 USA Daughter 7/25/2003 little girl none so far yes Scopp minsco72sbcglobal (DOT) net Milford CT USA my 4 yr old daughter 2001-female none as yet YES! Cheryl Vahl (23 yr old daughter with BPES) cheryl-vahluiowa (DOT) edu 56 Arbury Dr, Iowa City IO USA (23 yr old daughter with BPES) F I'd like to meet others if there is a get-together in the US. Harvey happyappykd Charlotte NC USA Myself and my daughter Paige 2 surgeries for me, none yet for my daughter sure Dawn Quote Link to comment Share on other sites More sharing options...
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