Know Your Numbers: Getting to Normal and Staying There
Clinical Nurse Specialist Daphne Adelman, RN, BSN, MBA, will walk you through the numbers to know when you’re living with acromegaly. Learn what's normal and what's not, and how to work with your doctor to help get your numbers in the normal range.
Help Manage Your GH and IGF-1 Levels, Make Smart Choices
Learn how to get active in monitoring and managing your acromegaly, and about healthy choices you can make every day, with your doctor’s approval.
Taking a Proactive Role in Your Acromegaly Care
What does it mean to be proactive? Clinical Nurse Specialist Daphne Adelman, RN, BSN, MBA, shows you how to take an active part in managing your acromegaly, including learning about the disease, knowing your numbers, following your doctor's advice, taking care of yourself, and living a healthy lifestyle.
Acromegaly Audio Chats: Episode 1
Listen to patients share their strategies for living with acromegaly. Hear their discussions about being diagnosed and gaining inspiration from other patients. While the patients in this group are portrayed by actors, the stories they share are based on real experiences of patients like you.
Encouragement and Support From Donna Wall
Listen to the perspective of a patient with acromegaly, Donna Wall, and find comfort and inspiration from her story. Hear how she maintains a sense of control over her life with acromegaly and encourages knowledge and support for both patients and caregivers.
Doctor Discussion Guide
Download talking tips and suggested questions to bring to your next doctor's appointment. Come prepared with questions from tracking your symptoms and treating your disease to talking confidently and openly about managing your acromegaly.
Your health care provider is your first source of information because he or she understands your individual medical needs. Still, the Internet can be a good source of information about acromegaly, and it provides a way for patients and families to talk with one another, and share feelings and resources. On this page, you will find links to sites that provide acromegaly resources and support groups.
Acromegaly Resources and Support Groups
The Pituitary Network Association (PNA)*
The Pituitary Network Association (PNA) is an international nonprofit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.
http://www.pituitary.org or call 1-805-499-9973
The Neuroendocrine Clinical Center of Massachusetts General Hospital*
Harvard Medical School
National Organization for Rare Disorders (NORD)*
NORD includes acromegaly in its rare-disease database and will e-mail or fax you a full report for a nominal fee.
http://www.rarediseases.org/ or call 1-800-999-NORD
The Hormone Foundation*
The Hormone Foundation is the public education affiliate of the Endocrine Society and is a leading source of hormone-related health information.
Acromegaly Community provides emotional and communal support for people touched by acromegaly.
*Novartis Pharmaceuticals Corporation may make donations to these support groups and organizations. However, Novartis Pharmaceuticals Corporation has no control over third-party websites and makes no representation as to the accuracy, completeness, adequacy, or any other aspects of the information contained on such websites.