Acromegaly is a hormonal disorder that most commonly occurs in middle-aged men and women.  The prevalence of acromegaly is approximately 4,676 cases per million population, and the incidence is 116.9 new cases per million per year.  The name "acromegaly" comes from the Greek words for "extremities" (acro) and "great" (megaly), because one of the most common symptoms of this condition is abnormal growth of the hands and feet. The symptoms of acromegaly can vary and they develop gradually over time; therefore, a diagnosis of this condition may be difficult. Early detection is a goal in the management of acromegaly because the pathologic effects of increased growth hormone (GH) production are progressive.

Current government trials on Acromegaly

Current clinical trials for Acromegaly patients from National Institutes of Health.  More...

Unmasking the Mystery of Acromegaly

For a 30 minute video on the treatment of acromegaly at the University of Michigan, please go to: http://www.itvisus.com/programs/hbhm/episode_803acromagaly.asp

AIP Mutation in Pituitary Adenomas in the 18th Century and Today - Abstract

January 6, 2011 - Gigantism results when a growth hormone–secreting pituitary adenoma is present before epiphyseal fusion. In 1909, when Harvey Cushing examined the skeleton of an Irish patient who lived from 1761 to 1783,1-3 he noted an enlarged pituitary fossa. DNA was extracted from the patient's teeth and a germline mutation was identified in the aryl hydrocarbon–interacting protein gene (AIP). Four contemporary Northern Irish families who presented with gigantism, acromegaly, or prolactinoma have the same mutation and haplotype associated with the mutated gene. Using coalescent theory, we infer that these persons share a common ancestor who lived about 57 to 66 generations earlier. For information to obtain the entire article and citation, visit:  http://www.nejm.org/doi/full/10.1056/NEJMoa1008020

Is Acromegaly Hereditary?

Rarely pituitary adenomas can occur in families. If no other abnormality is associated then this condition is called Familial Isolated Pituitary Adenoma. Most often family members have acromegaly or prolactinoma, sometimes other types of adenomas.  For further information about FIPA, visit www.fipapatients.org.

European Journal of Neuro-Endocrinology Article, Jan 2006 THE COST OF MEDICAL CARE FOR THE ACROMEGALIC PATIENT by  Robert Knutzen, CEO PNA and Shereen Ezzat, M.D. The subject of health care costs for patients with acromegaly is a difficult puzzle to solve. This is mostly because the disease has no clear limits with many permutations related to its complications. Thus, we feel obligated to emphasize at the outset that patients with acromegaly do not simply suffer from a tumorous disorder. They sustain a disorder characterized by insidious, seemingly “unrelated” symptoms and complaints, overlaid with severe hidden complications before the true diagnosis is established. Up until now, there has been no consensus on a standardized scientific approach to calculate the economic burden of the disease and all of its complications. The Cost of Medical Care for the Acromegalic Patient - read article

HOW ACROMEGALICS ARE SEEN BY THE WORLD

by Robert Knutzen, MBA, CEO Pituitary Network Assn.     As you can imagine we read a great deal of medical information here: studies, articles, conclusions, opinions, patient's perspectives, physician's perspectives, etc. What is puzzling, however, is the absence of clear definitions regarding numbers of patients, diagnosis, time of onset, seriousness of complications, etc.     We travel the world for information on treatment and options and perspectives. Sadly; while there is so much progress and sharing of good information on some fronts, it is woefully inadequate and antiquated in others. Clearly there is not one view of acromegalics; we are perceived, not as we really are, but by  some as something vaguely remembered from medical school or an old medical article that no one has bothered to update or change in many years...    More...

One Woman's Opinion

May I say thank you for the obvious hard work etc.. that went in to the creation of this very informative web site.  I, personally , have read everything on here and more than once.  I used this site along with many other resourses in my search to find knowledge and care. I'm sure nobody can argue that this site is the best !!! and nobody can argue about seeking knowledge... and, being a former teacher, I agree completely "read, learn, explore!"

Treatment Guidelines

The American Association of Clinical Endocrinologists (AACE) guidelines for Acromegaly treatment.

Information on Heart Problems and the Acromegalic Patient

Dr. Annamaria Colao's study on the reversal of acromegalic cardiomyopathy in young but not in middle-aged patients after 12 months of treatment with the depot long-acting somatostatin analogue octreotide. More...

OUR MISSION:   To support, pursue, encourage, promote and where possible, fund research on Pituitary Disorders in a sustained and full time effort to find a cure for these illnesses.  The PNA will disseminate information helpful to the Medical Community, the public and to pituitary patients and their families on matters regarding early detection, symptoms, treatments and resources available to patients with pituitary disease. Note: The PNA does not receive Federal or State Funding for any of its work, projects or studies..