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Facing acromegaly?

Focus on what's next.

MEET PAMELA A patient living with acromegaly*

Photograph of Pamela, with the words “a patient living with acromegaly” noted in an asterik

*Pamela is a paid patient participant with acromegaly who provided informed consent for her images to be used.

What is Acromegaly?

A Rare Endocrine System Disorder

You may have recently been diagnosed with acromegaly, or your doctor may suspect it. Facing any serious diagnosis is challenging, and acromegaly's rarity can make it feel even more isolating.

Did you know?

Acromegaly may go undiagnosed for over a decade because its symptoms develop gradually. Learning about the condition and its causes is a crucial first step toward understanding your diagnosis and taking control of your health.

Image of a brain, with the Pituitary Gland pointed out.

The Pituitary Gland:
Your Body’s Control Center

The pituitary gland is a small, pea-sized gland at the base of the brain that regulates your endocrine system. It tells other glands what to do, and it makes and releases several important hormones, including growth hormone (GH).

Too Much of a Good Thing

Whenever GH is released, your liver responds by making another hormone called insulin-like growth factor 1 (IGF-1). Too much GH causes your body to make too much IGF-1.

When this happens over a long period of time, you end up with too much of both hormones—that’s when acromegaly symptoms may start.

In adulthood, both GH and IGF-1 play a role in maintaining bone and muscle tissue.

What causes acromegaly?

Acromegaly is usually caused by a noncancerous pituitary tumor, also called a pituitary adenoma.

Image of a Pituitary Adenoma, with the Pituitary Adenoma pointed out.

You Are Not Alone

Acromegaly: By the Numbers

In the United States, there are around 25,000 people living with acromegaly.

Photograph of Martin, an acromegaly patient.

*Martin is a paid patient participant with acromegaly who provided informed consent for his images to be used.

Symptoms usually appear at an average age of 40 years.

People may have symptoms for 5-10 years or more before receiving diagnosis.

About 3,000 new cases are diagnosed in the U.S. each year.

Even though the occurrence of acromegaly is rare, it’s still a challenging diagnosis if you’re among the unique group of people dealing with this condition.

*Martin is a paid patient participant with acromegaly who provided informed consent for his images to be used.

Signs & Symptoms

Identifying Physical Characteristics

The symptoms can vary, but there are some common features that are regularly present among people with acromegaly.

Symptoms that may indicate a possible acromegaly diagnosis:

Brow bone becomes more prominent

Bridge of nose increases in size

Lips, nose, and tongue become larger

Lower jaw juts out

Spaces between teeth increase

Voice becomes deeper

Skin becomes thick, coarse, and oily

Hands and feet become larger and swollen

Sweating and skin odor increase

Skin tags may appear

Bone changes are noticeable

In addition to physical changes, people with acromegaly may experience other serious health issues:

High blood
pressure

Type 2
diabetes

Spinal curving
and fractures

Sleep
apnea

Other Affected Bodily Systems:

Joint pain, arthritis, and carpal tunnel syndrome

Headaches and visual disturbances

Added growth of tumors in those with a genetic disposition and benign tumors

Diagnosis is Important

Early Diagnosis from a Specialist is Key

Photograph of a healthcare provider sitting down and speaking to Pamela, and acromegaly patient.

Acromegaly is more than a medical condition—it can affect nearly every aspect of life. Physically, it may cause gradual changes that can be difficult to recognize at first, but become more noticeable over time. These changes can lead to discomfort, health complications, and challenges with self-esteem.

For families, the journey often involves adapting to a loved one’s evolving needs, managing appointments, and supporting emotional well-being. Navigating the uncertainty of a rare diagnosis can feel overwhelming, but understanding the condition and finding the right support can help both individuals and families regain a sense of control and balance.

With early diagnosis, proper treatment, and a strong support system, people with acromegaly can better manage the condition and improve their quality of life.