Just Found Out About BWS

[danielb59]

I am a 68 year old male in the U.S. I had macroglassia as a newborn along with the strawberry forehead mark and a hernia. The macroglassia was surgically corrected at age 15 months and the hernia at 9 years. The forehead mark never shows unless I get embarrassed or tired. I never knew there were others similarly affected until I did a Google search for "enlarged tongue" which resulted in several sites addressing BWS. I am tall (6'4") and, at least according to testing, above average in intellect. It is good to know there are others similar to me. At the time of my birth there were no doctors who could advise my parents as to the cause of my problem, but now I know. Thanks for this site.

[mychild]

Hi Daniel , my daughter is a child of BWS .

[danielb59]

After all this time it is good to know there are others like me with BWS. All my life, even now, doctors tell me that they had never seen or heard of my situation, particularly the enlarged tongue. Just last week, at the dentist office, I was asked to stick out my tongue so that they could better reach something in my mouth. I replied that I couldn't because of the reduction glossectomy when I was a child. The dentist indicated that he had never heard of a condition that would require a child's tongue be cut off like mine, saying that it was likely some "genetic thing". I have always thought that I was alone in this regard.

OH, by the way, the tongue has never been a speech issue even though it is a bit unsightly. I can say "tongue twisters" with the best.

[Joan1976]

Wow..nevér heard from grown up who's been through all this themselves.. .Very reassuring