Guest guest Posted August 6, 2010 Report Share Posted August 6, 2010 Name Email Address & City State /county People in my family with BPES Year of birth / Gender Surgery information Would like to meet others in area My ID for Messenger julie kookie61@... west london just me 1961 5 ops yes Suzanne & Jeff Heatwole jeff.heatwole@... Harrogate 1 Daughter Ella 2002 Female Brow suspension at 4 months yes suzanneheatwole Todd Obbard carolineobbard@... Ashford, Kent just me 2002/male none to date yes Vicky, Mark & vcash67@... Macclesfield,Cheshire Just 2005/male None, yet Yes markvincent72 June June3005@... Warrington Cheshire Son & Grandson 1972Male/2006 Male Son1976 /Grandson none yet Yes fall3005 abbie gogarty abbie_gog@... west midlands sister and father 1975, female bilateral sling in 1993 yes abbie_gog Seville patseville@... Manchester My daughter Nicola (also has Ohdo Syndrome) 14th March 1988 - Female None Clare Teale clareteale@... Hertford Me and my daughter (8) 1968 female 2 ops at 14yrs, daughter at 4yrs both by Mr Colin, Moorfields yes Shena Lawrence shena.lawrence@... Derby Molly - daughter 1996 Evie had surgery when she was 6 - a brow sling to help her open her eyes yes shena Anita Holcroft anita.holcroft@... Leamington Spa Me and my mother 1966/Female Surgery every other year from age 2 -10. Lid surgery age 10. One final op at age 21. Surgeon: Dr Lendrum at Manchester Royal Eye Hospital. YES Celine celine180@... Kent Just me! 20 years old. female. two ops age 5 and 6 Yes Ali other.sodiqs@... Leicester Just me 2003/Male Planned for 2007 (age 4yrs) Bipin Mahey tessamackenzie@... London Father, uncle, aunt, grandfather 2005 male none yet yes haribo.molly@... bolton just molly 2006 none yet yes please wendy673755 Filbey scottfilbey@... truro cornwall me yes add my email therese daniell theresedaniell@... Tiverton Devon my daughter Esme 07/10/2004 female planned for 2007/8 yes Singer .Singer@... South London, SE19 England Brother, Daughter and Nephew 1961 / Male Sure, why not :-) South_London_Man2003 Vickie Goodman vickiepinkandrew@... 41 Springfields, Braintree, Essex Essex Husband, Daughter, Father-in-law and sister -in-law 25/09/2006 Female None yet Essex Bayleigh Mae Goodman vickiepinkandrew@... Braintree Essex Father, Auntie, Grandfather, 1996 - Female No ops as yet, will have surgery when I am 3/4 years of age Yes Parsons parsonsfamily108@... Colchester Essex 1, my daughter Kirsten 2002/ Female Temporary lid lift at 2 years old. Y-V canthoplasty at 3 years done at Moorfields. 2nd and final lid lift using fascia at 4yrs. Surgeon Mr Collin Yes Hannah Hampshire sister, dad, uncle, cousins, grandad 1979 / Female yes sadieben2000 Holly Chidgey lcgosport@... Gosport Hampshire None 2005/Female Eye lift Sept 2006 aged 18 months Yes definitely Clair Coy claircoy@... Eversley Hampshpire Me 26/02/1984 Female (ptosis) Bilateral Y-V medial canthoplasty + transnasal wire 29 Aug 1997 (13 years old) Bilateral brow suspension with autogenous fascia and lacrimal syringing 1 Apr 1998 (14 years old) I never had the 3rd surgery which he thought was unnessary. Mr Colin, Moorfields. Mandy Naylor (nee Goode) bilmansamjam@... Hereford Herefordshire loads 1969 / F 2 ops at 6 and 8 years old, none for daughter yet. Consultant at Queens in Birmingham. yes spuduk33 Imogen martin@... Ormskirk Lancashire just me 1991 Female None Maybe mjdheffernan@... Shireen shireen@... London London 1. just me. 1961 / Female at ages 2.5, 12, 18. All three were done by Mr s at Great Ormond Street Hospital for Children, in London, England. Yes shireenimohandes Bryony bryony2@... Oxford LOTS!!!! 1978 Female Lots at Great Ormond Street with Mr Collin Yes Nadine Duncan birrellnadine@... Gateshead Tyne & Wear me 21.5.77 Female 2 operations at Moorfields at age 9 & 10 yrs yes birrellnadine@... Grace Horsley nicola_horsley@... Bingley West Yorkshire Just Grace 2005 Female None as yet Joyce Ibitoye joyceaibitoye@... London Westminster Both daugters Mayowa and Tina 1994/1997 females Mayowa 2 surgeries at 6 and 11. Tina 1 surgery @ 8 years old. BPES runs in their dad's family. Already met a few will like to meet as many as possible Quote Link to comment Share on other sites More sharing options...
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