KidsMD Health Topics

Addison's Disease

  • Overview

    I have this great privilege of being able to restore many of my patients to normal functioning and see them feel better the day after they start medication.

    David Breault, MD, PhD, Boston Children's Hospital endocrinologist

    If your child has Addison’s disease, it means her adrenal glands aren’t functioning properly, causing a hormonal disorder. While it can be serious, there are good treatments. Here’s what you need to know about this rare condition: 

    Addison’s disease occurs when there is the body produces too little:  

    • cortisol, a steroid hormone that helps regulate the body's use of nutrients, maintain blood glucose levels, support blood pressure, suppressinflammatory reactions in the body, and affect immune system functions
    • aldosterone, a steroid hormone that controls sodium and potassium in the blood 

    Here are some other basic facts about Addison’s: 

    • Addison’s disease affects the body’s ability to respond to physical stress.
    • While it’s considered to be a rare disease, at least 8,000 Americans have the condition.
    • It can affect children of any age.
    • Addison’s disease can be caused by a number of things, including autoimmune disease, infections, an X-linked trait blood loss and cancer.
    • If it’s untreated, Addison's disease can cause severe abdominal pain, weakness, low blood pressure, kidney failure and shock.

    How Children’s Hospital Boston approaches Addison’s disease

    Here at Children’s, Addison’s disease is treated in our General Endocrinology Program, a multidisciplinary program that provides comprehensive diagnosis, treatment and management for patients with disorders of the adrenal gland and other parts of the body associated with the endocrine system.

    Our approaches to treating Addison’s disease are both patient-focused and family-centered. We never lose sight of the fact that your child is, first and foremost, an individual—not merely a patient—and we include your family at every stage of the treatment process. 

    A family's gratitude

    Read one family's letter of thanks for the care provided by Virginia Rich, a nurse in Children's Endocrinology Program.

    Addison's disease: Reviewed by David Breault, MD, endocrinologist
    © Children’s Hospital Boston, 2011

    Contact us text

  • In-Depth

    Addison's disease is the result of the adrenal gland(s) producing too little: 

    • cortisol, a steroid hormone that helps regulate the body's use of nutrients, maintain blood glucose levels, support blood pressure, suppressinflammatory reactions in the body, and affect immune system functions
    • aldosterone, a steroid hormone that controls sodium and potassium in the blood

    Addison’s disease affects the body’s ability to respond to physical stress. While it’s considered to be a rare disease, at least 8,000 Americans have the condition, and the onset of the disease may occur at any age. 

    How does inadequate corticosteroid production affect my child?
    Corticosteroids play an important role in helping the body fight infection and promote health during physical stress.

    The lack of adrenal hormones may cause: 

    • elevated levels of potassium
    • extreme sensitivity to the hormone insulin, which is normally present in the bloodstream. This sensitivity may lead to low blood sugar levels.
    • increased risk during stressful periods, such as surgery, infection or injury 

    Did you know?

    The Endocrinology Program at Boston Children's Hospital has been ranked as #1 among all pediatric hospitals by U.S. News & World Report.

    Causes

    What causes Addison’s disease?
    Addison’s disease is most often caused by the destruction of the adrenal gland due to an autoimmune response. Some cases are caused by the destruction of the adrenal glands through cancer, infection or other disease.

    Other causes may include: 

    • use of corticosteroids (such as prednisone) to treat another condition, such as asthma, inflammatory bowel disease or certain types of cancer. These therapies may cause a slowdown in the production of natural corticosteroids by the adrenal glands. Following the withdrawal of such mediations under medical supervision, the adrenal gland can usually regain normal function with time.
       
    • use of certain medications to treat fungal infections, which may block production of corticosteroids in the adrenal glands 

    In rare cases, Addison's disease is inherited as an X-linked trait, meaning that the gene responsible for the condition is located on the X chromosome and passed down from a mother to her child. In this form, symptoms typically begin in childhood or adolescence.

    Signs and symptoms

    What are the symptoms of Addison’s disease?
    Symptoms of mild Addison's disease may only be apparent when your child is under physical stress. While each child may experience symptoms differently, some of the most common symptoms include: 

    • weakness
    • fatigue
    • dizziness
    • rapid pulse
    • darkening of the skin (first noted on hands and face)
    • black freckles
    • bluish-black discoloration around the nipples, mouth, rectum, scrotum or vagina
    • weight loss
    • dehydration
    • loss of appetite
    • intense salt craving
    • muscle aches
    • nausea
    • vomiting
    • diarrhea
    • intolerance to cold 

    If left untreated, Addison's disease may lead to:

    • severe abdominal pain
    • extreme weakness
    • low blood pressure'
    • kidney failure
    • shock

    The risk of developing these problems is especially high when a child is experiencing physical stress.

    Questions to ask your doctor

    You and your family are key players in your child’s medical care. It’s important that you share your observations and ideas with your child’s health care provider and that you understand your provider’s recommendations.

    If your child is exhibiting signs of Addison’s disease and you’ve set up an appointment, you probably already have some ideas and questions on your mind. But at the appointment, it can be easy to forget the questions you wanted to ask. It’s often helpful to jot them down ahead of time so that you can leave the appointment feeling like you have the information you need. 

    If your child is old enough, you may want to suggest that she write down what she wants to ask her health care provider, too. 

    Some of the questions you may want to ask include: 

    •  How will Addison’s disease affect my child long-term?
    • How often will my child need to see his doctor?
    • Is my child getting the optimal treatment? How do we know what the optimal treatment is?
    • Are there any special instructions for giving my child his medications?
    • What other resources are there for me and my child? Where else can I get information?

    FAQ

    Q: What is Addison’s disease?
    A: Addison's disease is the result of the adrenal gland(s) producing too little of certain hormones that regulate key processes in your child’s body. It also affects the body’s ability to respond to physical stress. Addison’s disease is considered to be a rare condition, and the onset can occur at any age.

    Q: What causes Addison’s disease?
    A: Addison’s disease is most often caused by the destruction of the adrenal gland due to an autoimmune response. Some cases are caused by the destruction of the adrenal glands through cancer, infection or other disease. 

    Q: How will my child’s doctor diagnose Addison’s disease?
    A: Symptoms for Addison’s disease often come on slowly and may only be apparent when your child is under physical stress. Targeted blood tests will help your child’s doctor definitively diagnose whether or not your child has Addison’s disease. 

    Q: How is Addison’s disease treated?
    A: The goal of treatment is to restore your child’s adrenal function by replacing essential hormones. These hormones may be taken orally or intravenously, depending on your child's condition. In most cases, your child must continue taking them for the rest of her life.

     Q: How serious is Addison’s disease if left untreated?
    A: If left untreated, Addison's disease may lead to severe abdominal pain, extreme weakness, low blood pressure, kidney failure and shock, especially when a child is experiencing physical stress.

    A guide to the endocrine system

    Learn all the basics about your child's endocrine system and the importance of regulating hormones.
  • Tests

    How is Addison’s disease diagnosed?
    Symptoms for Addison’s disease often come on slowly. In addition to a complete medical history and physical examination, diagnostic procedures for Addison's disease may include:

    • laboratory blood tests to measure levels of corticosteroid hormone (cortisol) and the pituitary hormone ACTH, which regulates adrenal gland function
    • an ACTH stimulation test to assess adrenal gland function
    • measurement of electrolytes in the blood

    Based on the results of these tests, your child’s doctor will be able to definitively diagnose whether he has Addison’s disease.

    Spotlight on: Endocrinology research at Boston Children's Hospital

    Find out what Children's endocrinology researchers are working on right now.

  • How is Addison's disease treated?
    The goal of treatment is to restore your child's adrenal function by replacing essential hormones such as hydrocortisone. Sometimes, prednisone may be used in place of hydrocortisone. 

    • Hormones may be taken orally or intravenously, depending on your child's condition. In most cases, your child must continue taking them for the rest of her life.
       
    • Your child may need to increase her medication during times of physical stress, injury, infection or surgery.
       
    • Treatment may also include fludrocortisone, a synthetic form of aldosterone that helps restore the body's levels of sodium and potassium.

    Because Addison's disease is rare and isn't typically tested for in an emergency situation, it's a good idea for your child to wear a Medic Alert bracelet that clearly communicates her condition to others.

    Coping and support

    You may have a lot of questions when your child is diagnosed with Addison's disease. We've tried to provide some answers to those questions on this site, but there are also a number of other resources to guide you and your family through diagnosis and treatment here at Boston Children's Hospital: 

    Patient education
    From the first office visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. They will also reach out to you by phone, continuing the care and support you received while at Children's.

    Parent to parent
    Want to talk with someone whose child has been treated for Addison's disease? We can put you in touch with other families who have been through the same treatments that you and your child are facing, and share with you their experience at Children's.

    Social work and counseling
    Our clinical social workers have helped many other families in your situation. Your social worker can offer counseling and assistance with issues that stem from the stress of Addison's disease.

    Learn more about Children's resources for patients and families. 

    One in 10 million

    A rare and mysterious disease made Katie a stranger to herself. Read her story.

  • Research & Innovation

    At Children’s Hospital Boston, we’re known for our science-driven approach and our intense culture of innovation—a philosophy that pushes the boundaries of pediatric care. We’re frequently ranked as one of the top pediatric hospitals in the United States. 

    Doctors at Children’s currently understand most of what they need to know to effectively treat conditions like Addison’s disease. The focus now is on finding the next generation of therapies.

    A history of treatment

    There’s a long history at Children’s of treating conditions like Addison’s disease. In fact, John Crigler, MD—the founding chief of Children’s Division of Endocrinology—pioneered the use of glucocorticoids in the 1950s to treat patients with adrenal insufficiency. Today, Children’s physicians are building on that legacy through research and increased understanding of the best way to treat these conditions.

    Revolutionary research

    David Breault, MD, PhD, a pediatric endocrinologist at Children’s, is developing cell-based therapies using stem cell technology to optimize the replacement of missing hormones that cause conditions like Addison’s disease. His research includes searching for tissue stem cells within the adrenal gland itself that may be useful for treating adrenal insufficiency, or potentially using embryonic stem cells that may one day be converted into steroid-producing cells.

    Learn more about research at Children's.

    Search our list of clinical trials.

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