Acromegaly is a serious condition caused by a benign tumor of the pituitary gland that secretes excessive growth hormone. Untreated acromegaly results in marked bony and soft tissue changes including an altered facial appearance (frontal bossing, prognathism), enlargement of the hands and feet, sleep apnea, and carpal tunnel syndrome. If the tumor develops before bone growth is completed in adolescence, the result will be gigantism. Because of the serious systemic changes resulting from GH excess, treatment is essential, typically with surgery.

Symptoms may include enlargement of forehead and jaw with pronounced under- or overbite, Carpal tunnel syndrome, Arthritis, Oily skin and excessive sweating, tiredness, fatigue, depression, impotence, loss of libido, interrupted menstrual cycle, false lactation, heart disease and heart enlargement, hypertension, diabetes, sleep apnea, loss of vision, headaches, colon polyps and colon cancer.

This group is meant to be supportive of acromegaly patients and their friends and family. Patients and their support network usually have a ton of questions and there is a definite shortage of veterans of this disease.

The goal of this page is to just be there for each other. If you had it and beat it, know someone that has it, or had it, or you are medically knowledgeable, please join!

This is a scary tumor and you are faced with all sorts of scary choices. Come talk and share.

For patients on Sandostatin without health insurance (or minimal drug coverage):

http://www.us.sandostatin.com/hcp/reimbursement/programs-support.jsp?usertrack.filter_applied=true&NovaId=3350119494716199770

If you live in the US and have bad insurance or insufficient insurance, here is a website with phone numbers to apply for free/reduced meds through the various companies' indigence programs:
http://www.edhayes.com/indigent.html

Here is a website with an FAQ on it for indigent programs:
http://www.rxassist.org/faqs/default.cfm


An open letter SPECIFICALLY To Marketing people:

This group directory is strictly for Acromegalic people and their families to be able to contact each other. Members who are associated with "Think Tanks", marketing groups, or any sort of other professional organization may not contact other members to promote studies, information, or anything else without prior approval.

Marketing opportunities, studies, and the like must first be sent to the host. If they are seen to be legitimate and transparent, offers will immediately be promoted to members by the host.


Thank you.

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Acromegaly is a serious condition caused by a benign tumor of the pituitary gland that secretes excessive growth hormone. Untreated acromegaly results in marked bony and soft tissue changes including an altered facial appearance (frontal bossing, prognathism), enlargement of the hands and feet, sleep apnea, and carpal tunnel syndrome. If the tumor develops before bone growth is completed in adolescence, the result will be gigantism. Because of the serious systemic changes resulting from GH... (read more)