Read and hear answers to some common questions that patients with acromegaly have asked.
Please note that the patient testimonials shown on this page reflect only one person’s opinions about their own care. Each person’s case is unique and all treatments have side effects. These will vary depending on the treatment you receive and how your body reacts to it. Ask your doctor about side effects when considering a given treatment.
Acromegaly is a hormonal or endocrine disorder that is characterized by enlarged physical features such as a protruding brow, enlarged lips, an exaggerated jawline, and larger than normal hands and feet.
Acromegaly is caused by a benign tumor in the pituitary gland, which is a small pea-like structure at the base of the brain.
The presence of the tumor in the pituitary gland leads to the overproduction of growth hormone in the body which leads to physical symptoms such as heavy or prominent facial features, hands and feet.
Acromegaly is not the same as gigantism. These are separate conditions. Acromegaly occurs in adults and gigantism occurs in children.
In the US, it has been estimated that there are only around 11 people per million people in the general population newly diagnosed with acromegaly each year.
It is unlikely that other family members will have acromegaly or that it will be passed on to your children.
Acromegaly usually occurs in adults from ages 30 to 50 years.
The symptoms of acromegaly vary from person to person but may include heavy or prominent facial features, enlarged hands (e.g. rings not fitting) and enlarged feet (e.g. shoes not fitting), among many others. Such symptoms may appear gradually and thus be difficult to spot.
Acromegaly can affect eyesight. However, problems with vision caused by the benign pituitary tumor pressing on the optic nerve can often be resolved substantially by surgery to remove the tumor.
An endocrinologist usually confirms a diagnosis of acromegaly. If you think you could have acromegaly symptoms, please go to your usual doctor who should refer you to an endocrinologist.
The diagnosis of acromegaly is often delayed as the symptoms develop gradually. It is not uncommon for people to remain undiagnosed for several years, up to 10 years in some cases.
Acromegaly itself cannot be prevented but it can be treated very effectively.
Acromegaly can cause complications, such as diabetes and heart problems, that can shorten your life expectancy if left untreated.
Once the initial phase of treatment is over and your condition has stabilized there should be no health reason why you cannot go on vacation or take that business or study trip.
Learn about acromegaly including what causes this slowly evolving condition, and the early symptoms and signs
Information about the emotional, physical and social challenges of living with acromegaly
Find an acromegaly patient support group in the US to find out about local activities and events that you may be able to attend