Some guy with acromegaly

Living with Acromegaly

Acromegaly is a rare hormonal disorder that most commonly affects middle-aged men and women. This condition is caused by the overproduction of growth hormones in the pituitary gland, which is located at the base of your brain.

People with acromegaly experience symptoms such as abnormally large hands, feet, and facial features. Acromegaly can also potentially affect the other organs in your body as well, leading to an enlarged heart, liver, spleen, and kidneys. If acromegaly is not diagnosed in a timely manner and effectively treated, it could lead to very serious complications and even death.

Although the symptoms of acromegaly can be effectively managed by beginning a treatment plan, it may take up to ten years after treatment is complete to be able to notice the full effects. Because of this, living with acromegaly can be a difficult experience. While the symptoms of this condition are primarily physical, acromegaly can impact your emotional well-being and self-image as well. Here are some tips for effectively managing the condition. 

Responding to the Diagnosis

How you react to your diagnosis of acromegaly can vary greatly. Some people may feel frustrated and overwhelmed, while others may be relieved to finally have an explanation for their long-term symptoms. Once you are able to recognize and deal with your condition and the impact it has on your life, you will be able to move towards a healthier emotional state.

Rather than surrendering to your condition and letting it rule your life, you will be able to take an active role in managing it. While it can sometimes be a long process to fully adapt to living with acromegaly, in the end, it is the best way to live a full and rewarding life.

Taking Action in Your Treatment

Playing an active role in managing your acromegaly is very important. Here are some of the specific actions you can take to stay on top of your condition:

  • Have a good relationship with your healthcare team: This is the best way to create a successful treatment plan, be knowledgeable about your disorder, be able to comfortably talk about your symptoms, and feel confident about the status of your health. Always provide accurate information about all of the symptoms you experience to your healthcare provider, and never hesitate to ask any questions that may be concerning you about your condition.

  • Never miss appointments: Having a regular appointment schedule is important for managing acromegaly. Your doctors will need to be able to monitor things such as your blood test results, the size of your pituitary tumor, the activity of your pituitary gland, the effects of your medications, and your overall health and well-being. If you do not make a commitment to make and keep these appointments on a consistent basis, then your healthcare team will not be able to remain completely informed about your health and how well your treatment plan is working.

  • Keep a positive attitude: This is true for any chronic or serious medical condition. Maintaining a positive outlook while dealing with your condition in both social and occupational settings can help you to remember that you are more than your disease. Focus on the things that make you happy so your disorder does not become the only thing that you think about.

Finding Support

It can also be extremely helpful to find support while dealing with acromegaly. Support groups can help to make you feel more understood, as well as empower you to take charge of your health. They can also be good for making you more knowledgeable about your condition. There are many different support groups, both in-person and online, for acromegaly that may be available in your area.

Last Updated: January 19, 2016