01/11/2020
Acromegaly awareness is November 1st ...
Andre the Giant and his Gigantism is what you might be more familiar with. However, Gigantism and Acromegaly are not the same disease, but they develop from the same region in the body, the pituitary gland. In children, gigantism occurs when this gland, located near the brain, produces an excessive amount of growth hormone (GH), which triggers bones to grow in length at the growth plates, and causes subsequent, abnormal growth spurts.
Acromegaly on the other hand, also caused by excess growth hormone, only occurs in adulthood.
In Andre's case his size was a result of gigantism caused by excess growth hormone as an adolescent which later resulted in acromegaly as an adult.
Acromegaly cannot be cured and is catagorized as a "Very Rare" disease which is fewer than 20,000 active cases per year in the US. 1 person per 1000 have a rare disease, in comparison, 1 person in every 10,000 have Acromegaly.
In the United States there is currently estimated to be only 19,000 - 25,000 people who are diagnosed and living with acromegaly.
Acromegaly is caused by a benign tumor on the pituitary gland which is located at the base of the brain, straight back between your eyes. The pituitary is your master gland that regulates all hormones thus controlling proper function of all major organs.
Some tumors are the size of a pin head while others are golf ball size amd larger becoming wrapped around the carotid artery and or pushing on or damaging the optic chiasm. Microscopic tumors are just as devistating as large tumors.
Acromegaly is the production of excess GH (growth hormone) caused by the tumor. Excess GH usually causes excess growth of soft tissue such as nose, lips, tongue causing obstructive sleep apnea among multiple other health problems. Hands and feet also get bigger resulting in bigger ring size and bigger shoe sizes as well as weight gain.
Others like myself experience enlargement of organs including the heart, liver, pancreas, bile duct. Diabetes, Colon polyps, enlarged cystic disease, Jaw bone growth creating severe under bite, gapping of teeth and misalignment of the jaw, skull & brow bone growth, orbital socket growth, spine growth creating curvature of the spine, Temporalis muscle stretching and constriction all of which I am currently dealing with.
We experience sever headaches, vision problems, heat intolerance, excess sweating, muscle deteriation and weakness, severe joint pain, exhaustion. Most joint and muscle issues and exhaustion are on a daily basis.
This is a deadly disease if left untreated that can shorten life span by 10 - 20 years ... if not in remission, it is a devistating and debilitating disease. Most acromegalics like me "are not" in remission and will be on injectable medications for life that cost thousands of dollars per month.
Transsphenoidal Surgery is the first recommended option. This surgery at the base of the Brain is performed by a Neurosurgeon. Medications is the next option and finally radiation.
Specialists in the care of my Acromegaly include - Endocrinologist, Neurosurgeon, Cardiologist, Electrophysiologist, Gastroenterologist, Urologist, ENT, Optometrist, Orthopedist, Oral Maxillofacial Specialist.
Famous people with Acromegaly ...
Ted Cassidy - Lurch Adams Family
Carel Struycken - Lurch, Adams Family Movies Richard Keil - Jaws in James Bond movies
Rondo Hatton - House of Horror movie
The Great Kahli - American Wrestler
Paul Benedict - Bentley on the Jefferson's
Tony Robbins - inspirational speaker
JP Castillo-inspirational son & youngman
