Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hello my name is and I am new to this support group. I am a 48 year old female with documented Belpharophimosis type 1. I hope to talk with other adults who have this disease/disorder. If this is you PLEASE feel free to email me I look forward to hearing from you.If your in the medical field and would like to visit I am here and I would like to visit with you as well. You cant imagine my delight when I discovered theres a support group on line for this ........ ALOT has changed in 48 years of having this. I have always wondered something? How old is the oldest living person with this disease/disorder? Do any of you know? I grew up with pretty much so NO INFORMATION about this disease. It was shall I say kept in the closet by our family and or there wasnt much know back then. Looking forward to hearing from you.....Take care and smile.Its medicine for the soul. in Washington State Quote Link to comment Share on other sites More sharing options...
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