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Acromegaly can affect people in many different ways, and how you feel will change over time. Working with your doctors to make sure you have the best treatment and symptom control possible is an important part of managing your acromegaly. Whether you have just been diagnosed, or have been receiving treatment for some time, the information here may help you continue to live the life you want.
Although acromegaly is a rare disease, you are definitely not alone. Around the world as many as 1 million people have acromegaly,* and every year between 16,000 and 86,000 people receive an acromegaly diagnosis.1
Many people feel it helps to learn as much as possible about their condition, hear about the experiences of other sufferers, and to share stories. There are several patient support groups available where you can find information on acromegaly, details of treatments and, if you want to, reach out to others.
World Alliance of Pituitary Organizations
The WAPO website has the details of member organisations around the world if you want to find a group near you.
Acromegaly Community
Designed to provide the emotional support of a community alongside medical information, the Acromegaly Community website has details of doctors worldwide that are familiar with acromegaly, its diagnosis and treatment.
*Based on prevalence of 133 per million and global population of 7.8 billion1
There are several patient support groups available where you can find information on acromegaly, details of treatments and, if you want to, reach out to others.
REFERENCES:
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Orphanet. The portal for rare diseases and orphan drugs - acromegaly. Available at:https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GB&Expert=963. Last accessed September 2020.
