Re: Nice messages

[Guest guest]

Hi Ami,

It is good to hear that you find comfort in this group, I do as well. Like you, I didn't know ANYTHING AT ALL about blepharophimosis until I took my baby to the doctor. It came as a chock. I have always thought that my eyes were something in just our family (lika some people have freckles or big noses). So it is a very good thing that this wonderful group exists!

I'm so sad to hear that you cannot have children... Loosing the twins must have been so terrible for you... I wish you and your husband the best and good luck in your decision.

StinaPB2X_Banshee <pb2x_banshee@...> wrote:

I am sitting here and reading all the support messages and thinking how happy I am to have found this group. Last night Shireen called me here in Sweden from England and chatted with me. I didnt know and really didnt have a caregiver who knew very much about the syndrom when I was growing up. Sadly I am one of the few with Bleph that is Type 1 and not able to have children. Two years ago I got pregnant and was carrying twins but in my third month I lost them...I was devistated. I didnt know at that time that the Bleph had anything with POF. The jerk of a doctor at the university of missouri endocrine center sat there with a smirk on his face as he told me "look at it this way, you have the best birth control in the world". I went into a depression not only from loosing the twins but also

learning in such a harsh way that I indeed had POF. I am remarried to a wonderful Swedish man and live now in southern Sweden. We have discussed IVF with an egg donor but also the possibility of adoption. We dont know yet what we want to do but its nice to know of all the support we have when we need it the most.Sincerely Ami & Mats Helge