Guest guest Posted August 3, 2008 Report Share Posted August 3, 2008 I just wanted to tell everyone who responded....THANK YOU! It is nice to know I am not the only paranoid person in this world....lol...and that I am not alone in my fears. Lottie your probably right it probably does have something to do with the depression I have been fighting lately. I can usually ignore it but every once in awhile it just kind of slips past my defenses and I start thinking about all the things I could miss out on in my childrens lives and it does get me down. It is also exhausting to always be afraid your gonna die. I see changes in my body and kinda forget for a moment I am actually getting old..(lol as if I could forget that!) and I think...oh no what kinda cancer causes THAT! I'm just relieved to know that I am not the only worry wort in the bunch! Anyway thank you all for your wonderful and uplifting responses! Hugs, Katy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2009 Report Share Posted March 23, 2009 Hi Kasia, Welcome to the group! I am sure you will find it as helpful and supportive as I have! I am , Irish - living in Ireland, mother to aged 2yrs old - my daughter who has BPES. I have two other children who don't have BPES and no one in our family has it either. We personally know of one other child so far in Ireland who has BPES who is 1yr old. If there is anything we can do to help, just let me know. was diagnosed at 6mths by the genetics team in Our Lady's Childrens Hospital Crumlin Dublin 12 by Dr Reardon, who sent off her bloods to the lab in Belguim. None of our doctors knew anything about BPES either, but 2yrs on we have learnt a lot from this forum, and the kind and generous help and support of the friends we have made here too! has had one surgery at 6mths to help her open her eyes, using silicone slings and she goes to London on the 6th April to have eye widening surgery, as our surgeon here in Ireland recommended we go to the 'expert' in this area, which is Mr Collin, Harley Street, London. Take care, talk soon. From: kasiab1981 <kasiab1981@...>blepharophimosis Sent: Thursday, 12 March, 2009 18:55:58Subject: blepharophimosis Thank you! Thank you sooooo much, it means a lot to me. It took me a long time to get here, but I'm so glad I finally found this group… Emalee, Joyce and - your massages really help – thank you. I went today to my GP and he didn't have a clue what I'm talking about – what didn't surprise me. I left him few articles to read about it and he already took some blood samples to test my hormones. I will meet him in two weeks to talk about it. And taking Joyce advice I will take some pictures and more information about it, I will ask him to refer me to a genetic counselor for a testing as well. I wish you a lovely weekend - I'm going home Poland this weekend :)Best Regards, KasiaSend instant messages to your online friends http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
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