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Acromegaly (cont.)

Outlook

Treatments for acromegaly are successful in a significant number of people. Unfortunately, however, the disease is rarely caught early enough to prevent permanent damage or even premature death.

  • Bone changes of acromegaly are permanent.
  • Many of the soft-tissue changes, such as swelling, enlarged tongue, thickened skin, acne, and carpal tunnel syndrome are reversible with treatment. Depression and sexual problems also may improve with treatment. Goiter and other organ enlargement improve in some cases.
  • Complications such as high blood pressure, diabetes, and high triglycerides start to reverse when the levels of growth hormone and IGF-1 are normalized. If these changes are reversed, serious illness, such as heart disease and stroke or death can be prevented.

Support Groups and Counseling

Living with acromegaly presents many new challenges, both for you and for your family and friends.

  • You will probably have many worries about how the disease will affect you and your ability to "live a normal life." Will you be able to care for your family and home, hold your job, and continue the friendships and activities you enjoy?
  • Many people feel anxious or depressed. Some people feel angry and resentful; others feel helpless and defeated.

For most people with a serious disease, talking about their feelings and concerns helps.

  • Your friends and family members can be very supportive. They may be hesitant to offer support until they see how you are coping. Don't wait for them to bring it up. If you want to talk about your concerns, let them know.
  • Some people don't want to "burden" their loved ones, or prefer talking about their concerns with a more neutral professional. A social worker, counselor, or member of the clergy can be helpful if you want to discuss your feelings and concerns about having this condition. Your primary care provider or endocrinologist should be able to recommend someone.
  • Many people with acromegaly are helped profoundly by talking to other people who have the disease. Sharing your concerns with others who have been through the same thing can be remarkably reassuring. This is why support groups exist. Because the disease is so rare, finding a support group in your area may be difficult, unless you live near a large medical center with many medical specialists. There are groups on the Internet that can help you find the support you need. If you do not have access to the Internet, go to your public library.

For more information about support groups, contact these agencies:

  • Pituitary Network Association - (805) 499-9973
  • The Hormone Foundation - (800) 467-6663

For More Information

Pituitary Network AssociationP.O. Box 1958Thousand Oaks, CA 91358(805) 499-9973The Hormone Foundation8401 Connecticut Avenue, Suite 900Chevy Chase, MD 20815-5817(800) HORMONE

Web Links

National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of HealthThe Endocrine Society

American Association of Clinical Endocrinologists

Medically reviewed by John A. Seibel, MD; Board Certified Internal Medicine with a subspecialty in Endocrinology & Metabolism

REFERENCE:

"Causes and clinical manifestations of acromegaly"
UpToDate.com


Medically Reviewed by a Doctor on 12/23/2015
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