Am I the only one who feels that there is something missing for acromegalics? We have so many aspects of our lives and our bodies that are affected by our disease and we suffer so long before we can even be diagnosed properly. Then once we have the diagnosis we can't go to one place and get answers to our questions. There isn't an "acromegaly" doctor. We don't have a specialist we can consult. If we can, I haven't found out about it and I'd like to know about it. I'm groping in the dark and doing a lot of guestimating about a lot of things. This site is the main place where I can find answers, support and hope, but it isn't a legitimate medical institution dispensing the advice and guidance we need in a timely fashion, is it? For example, does anyone know if the reason that the videos of acromegalics who have had the disease for decades never show anyone who has had their mandible corrected is because there wouldn't be room for their tongue? Is impossible for us to have our mandibles corrected? Where could we go to find answers to such questions?
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