Challenge and hope: How people experience and manage living with acromegaly


Posted: October 31, 2022 | Word Count: 684

Living with a rare disease can be an isolating experience that is difficult to navigate. Between delays in receiving the correct diagnosis to learning how to change daily habits for symptom relief, people who live with rare diseases must overcome many obstacles. Those living with acromegaly know this experience all too well.

According to the Endocrine Society, acromegaly is a rare condition usually caused by excess growth hormone in the body.[1] Symptoms can happen slowly, making the disease difficult to diagnose. Treatment options can include surgery, radiation therapy and systemic medications. However, the right treatment option is not always the first option. It takes time for many people living with acromegaly to work with their doctors to find the path to relief that works best for their symptoms, especially as more recently, personalized treatment has been recognized as quite important

Symptoms of acromegaly

No two acromegaly cases are the same, as people living with acromegaly can experience many different symptoms, most related to excess growth hormone levels. While symptoms can vary, some common ones include:

  • Headaches
  • Alterations in facial, skin, dental and other features
  • Joint aches
  • Excessive sweating

Many of these changes take place over many years, making it difficult to recognize that they have the same root cause.

Not only do people living with acromegaly have to contend with these symptoms, but many also experience other diseases. According to a study published in the Endocrine-Related Cancer journal, database surveys show co-morbidities — the simultaneous presence of two or more diseases — of those with acromegaly during initial diagnosis.[2]

For example, diabetes mellitus was present in 27.5%, hypertension in 28.8%, sleep apnea syndrome in 25.5% and cardiac hypertrophy in 15.5%. Serious cardiovascular outcomes like stroke, heart failure and myocardial infarction were present in less than 5% at diagnosis.

Even without the presence of another disease, many report a significant burden of living with acromegaly. Many experience incomplete control of their symptoms that interfere with their daily life, leisure and work activities, often throughout the treatment cycle.[3]

Life with acromegaly is challenging. Still, for many people, the diagnosis brings relief, and finding ways to better manage and treat the disease inspires a new lease on life.

How to manage acromegaly

Some people who live with acromegaly would like to continue their daily activities but need to make modifications based on their symptoms and treatment. A good way to adapt to living with acromegaly and managing symptoms is to work closely with a health care provider. They can help you develop a plan for how to alleviate symptoms while still maintaining daily activities. According to acromegaly experts, effective multidisciplinary treatment options require a high degree of personalization to successfully manage the disease.[4]

In addition to seeking help from a medical professional, people living with acromegaly do well when they have available resources. For those living with acromegaly, finding support resources can be vital to improving their quality of life. There are support groups, both in-person and virtual, that can connect people who live with acromegaly.

“The most important thing, I think, is not to stop doing what you enjoy, such as traveling and living how you want to live because of the illness,” said Sandrine, who lives with acromegaly.

With access to treatment plans and support, those living with acromegaly have the opportunity to live their lives despite this disease. To learn more about acromegaly and to find stories of those living with acromegaly, resources and support, visit Acromunity.com.

  1. Acromegaly. Endocrine Society. January 25, 2022. https://www.endocrine.org/patient-engagement/endocrine-library/acromegaly.
  2. Petrossians, P et al. “Acromegaly at diagnosis in 3173 patients from the Liège Acromegaly Survey (LAS) Database.” Endocrine-related cancer vol. 24,10 (2017): 505-518. doi:10.1530/ERC-17-0253.
  3. Geer, E.B., et al. Patient reported outcome data from acromegaly patients treated with injectable somatostatin receptor ligands (SRLs) in routine clinical practice. BMC Endocr Disord 20, 117 (2020). https://doi.org/10.1186/s12902-020-00595-4
  4. Giustina, Andrea et al. “Multidisciplinary management of acromegaly: A consensus.” Reviews in endocrine & metabolic disorders vol. 21,4 (2020): 667-678. doi:10.1007/s11154-020-09588-z.

This article is sponsored by Ipsen.

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