Hello, I just stumbled upon your blog. My 6 month old son, Caleb, has blepharophimosis; he has severe ptosis in both eyes. He just had his first surgery this week to widen his eyes and will have subsequent surgeries which sound similar to what your son had.
Elaine, thanks for stopping by my blog! I hope the surgery went well. My son had sling surgery at 15 months on one eyelid. Feel free to write me with any questions about it. We're still trying to figure all of this out, too.
Here is a link to more information about the genetics of Blepharophimosis, Ptosis, and Epicanthus Inversus Syndrome that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Blepharophimosis,_Ptosis,_and_Epicanthus_Inversus_Syndrome/749. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA
Hello,
ReplyDeleteI just stumbled upon your blog. My 6 month old son, Caleb, has blepharophimosis; he has severe ptosis in both eyes. He just had his first surgery this week to widen his eyes and will have subsequent surgeries which sound similar to what your son had.
Elaine, thanks for stopping by my blog! I hope the surgery went well. My son had sling surgery at 15 months on one eyelid. Feel free to write me with any questions about it. We're still trying to figure all of this out, too.
ReplyDeleteTake care--Joe
Here is a link to more information about the genetics of Blepharophimosis, Ptosis, and Epicanthus Inversus Syndrome that was prepared by our genetic counselor and which has links to some useful resources for those dealing with this condition: http://www.accessdna.com/condition/Blepharophimosis,_Ptosis,_and_Epicanthus_Inversus_Syndrome/749. There is also a phone number listed if you need to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA
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