Acromegaly Awareness Day is November 1st ...
Andre the Giant and his Gigantism is what you might be more familiar with. Gigantism and Acromegaly are the same disease, and they develop from the same region in the body, the pituitary gland. But at different times in our life. 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 as the growth plates are still open, and causes subsequent, abnormal growth spurts. Acromegaly on the other hand, also caused by excess growth hormone, only occurs in adulthood, after the growth plates have closed, and bones growth grows wide (broad).
Acromegaly cannot be cured and is categorized as a "Very Rare" disease which is fewer than 2000 active cases per year in Canada. 1 person per 1000 have a rare disease, in comparison, 1 person in every 10,000 have Acromegaly. In Canada there are currently estimated to be 2,000 - 2,500 people who are diagnosed and living with acromegaly, and believed by specialist that many people have acromegaly, but not yet diagnosed.
Acromegaly is caused by a benign tumour 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 tumours are the size of a pin head while others are golf ball size and larger becoming wrapped around the carotid artery and or pushing on or damaging the optic chiasm. Microscopic tumours are just as devastating as large tumours.
Acromegaly is the production of excess GH (growth hormone) caused by the tumour. Excess GH usually causes excess growth of soft tissue such as nose, lips, tongue causing obstructive sleep apnea, gaps forming between teeth as a adult, skin tags, , 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 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.
We experience severe headaches or migraines, vision problems, heat intolerance, excess sweating, muscle deterioration 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 devastating 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 are 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
Kevyn Aucoin - an American make-up artist, photographer and author.
Andre the Giant and his Gigantism is what you might be more familiar with. Gigantism and Acromegaly are the same disease, and they develop from the same region in the body, the pituitary gland. But at different times in our life. 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 as the growth plates are still open, and causes subsequent, abnormal growth spurts. Acromegaly on the other hand, also caused by excess growth hormone, only occurs in adulthood, after the growth plates have closed, and bones growth grows wide (broad).
Acromegaly cannot be cured and is categorized as a "Very Rare" disease which is fewer than 2000 active cases per year in Canada. 1 person per 1000 have a rare disease, in comparison, 1 person in every 10,000 have Acromegaly. In Canada there are currently estimated to be 2,000 - 2,500 people who are diagnosed and living with acromegaly, and believed by specialist that many people have acromegaly, but not yet diagnosed.
Acromegaly is caused by a benign tumour 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 tumours are the size of a pin head while others are golf ball size and larger becoming wrapped around the carotid artery and or pushing on or damaging the optic chiasm. Microscopic tumours are just as devastating as large tumours.
Acromegaly is the production of excess GH (growth hormone) caused by the tumour. Excess GH usually causes excess growth of soft tissue such as nose, lips, tongue causing obstructive sleep apnea, gaps forming between teeth as a adult, skin tags, , 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 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.
We experience severe headaches or migraines, vision problems, heat intolerance, excess sweating, muscle deterioration 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 devastating 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 are 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
Kevyn Aucoin - an American make-up artist, photographer and author.