Living With Acromegaly, Connecting with a Supportive Community
If you’ve been diagnosed with acromegaly, it’s important to know that you’re not alone. Many other people in America and around the world are dealing with the same issues you are. There are a number of ways for you to connect with others and learn more about your disease. Several online resources can help you understand acromegaly better and find a community of people who want to exchange information and support.
Finding the Site That’s Right for You
There are many different websites that offer support for people with acromegaly. Try a few of them to be sure you find at least one that’s right for you.
The National Institutes of Health (NIH) has an acromegaly page that provides a number of links to other sources of information and support: http://endocrine.niddk.nih.gov/pubs/acro/acro.aspx. The NIH site also has links to websites with more general information, such as the National Organization for Rare Disorders. From there, you will be able to find more clinical information and helpful stories from others with acromegaly.
The Pituitary Network Association has an acromegaly portal, acromegaly.org, which offers online chat threads on a wide range of topics. You can write about your symptoms, compare doctors, find out about patient group meetings, or just say hi. Similar resources can be found at DailyStrength.org and MDJunction.com.
AcromegalyCommunity.com is an online resource for patients with acromegaly that is run by actual patients living with the disease. You’ll find a wealth of acromegaly information throughout the site as well as guidance and tips for daily living. This website has also developed a supportive community for patients that includes a discussion forum, a blog, and the ability to register for “One-2-One” support. By registering, patients can build one-on-one relationships and support each other throughout their acromegaly experiences.
Social media sites like Facebook have acromegaly pages you can “like” or join. Feel free to ask questions anonymously or make friends and ask your questions directly. If you’re a new patient, you can gather information, and if you’ve been living with acromegaly for a while, you can probably help someone else. Either way, it’s a win-win.
Key Online Resources for Acromegaly