What is Acromegaly?
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
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 2006The 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
THE COST OF MEDICAL CARE FOR THE ACROMEGALIC PATIENT
by Robert Knutzen, CEO PNA and Shereen Ezzat, M.D.
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!" |
|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...
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..
Last Revised : February, 2013
PNA FUNDRAISING CAMPAIGN
Help us reach every pituitary patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering. Your donation will make a difference! MORE
Patient Story: An Unexpected Twist
My story is like any other one of an acromegaly patient, well maybe with a little Latin twist. Very active, physically and intellectually, in the prime of my life, hopes, dreams, places to go, people to meet. normal.
FDA Approves Testosterone Gel Applied to Thigh
A topical testosterone gel designed to be applied to the upper leg has won FDA approval for use by testosterone-deficient men, its manufacturer said. The 2% testosterone gel will be sold under the name Fortesta by Endo Pharmaceuticals of Chadds Ford...
Getting the Most Benefit From Octreotide LAR
An important reminder in octreotide use: "At Mass General`s acromegaly seminar (30 June 2008), the nurses stressed the importance of continuous "swirling" of the octreotide itself during mixing, in fact, up to the moment of injection. The reason cited was that the more thorough the mixing, the more beneficial the effects from the injection. That information may be in the printed instructions but I think periodic reminders won`t hurt."
Acromegaly Clinical Trial
Effects of Growth Hormone Administration on Cardiovascular Risk Markers in Men and Women with Cured Acromegaly
This 12-month research study will evaluate the relationship between growth hormone (GH) levels and heart disease in subjects cured of acromegaly. Monetary compensation is offered to subjects.
Unlocking the Mystery of Acromegaly
View this 30 minute video on the treatment of acromegaly at the University of Michigan.
Clinical Review Abstract
The Antitumoral Effects of Somatostatin Analog Therapy in Acromegaly
John S. Bevan
Department of Endocrinology, Aberdeen Royal Infirmary, Aberdeen AB25 2ZN, Scotland, United Kingdom
Clinical Study Abstract
The `bio-assay` quality of life might be a better marker of disease activity in acromegalic patients than serum total IGF-I concentrations.
Ingrid E Bonapart1, Ron van Domburg2, Saskia M T H ten Have1, Wouter W de Herder1, Ruud A M Erdman3, Joop A M J L Janssen1 and Aart Jan van der Lely1
1 Departments of Endocrinology, 2 Biostatistics and 3 Psychology, Erasmus Medical Centre, University Hospital of Rotterdam, Rotterdam, The Netherlands
CME Clinical Update
Pharmacologic Treatment of Acromegaly.Author: Shlomo Melmed, MD
Medical Writer: Mary Beth Nierengarten, MA
Release Date: April 27, 2005; Valid for credit through April 27, 2006visit:
PNA Library Articles on Acromegaly
To view articles and case studys with up-to-date information on acromegaly, please visit: PNA Library
Real Financial Value of A Good Endocrinologist