Living With ALD

MANAGING ADRENAL
INSUFFICIENCY

Living With ALD

MANAGING ADRENAL
INSUFFICIENCY

Your Care Team Can Help You Manage Adrenal Insufficiency

Your Care Team Can Help You Manage Adrenal Insufficiency

If adrenal insufficiency leads to a diagnosis of adrenoleukodystrophy (ALD), it is important to see an endocrinologist who can help you manage the adrenal symptoms of the disease. Regular visits to your endocrinologist will allow them to help monitor, assess, and manage adrenal symptoms such as fatigue, loss of appetite, hyperpigmentation (skin darkening) and belly pain. 

If adrenal insufficiency leads to a diagnosis of adrenoleukodystrophy (ALD), it is important to see an endocrinologist who can help you manage the adrenal symptoms of the disease. Regular visits to your endocrinologist will allow them to help monitor, assess, and manage adrenal symptoms such as fatigue, loss of appetite, hyperpigmentation (skin darkening) and belly pain. 

80% of males with ALD will develop adrenal insufficiency

Adrenal Insufficiency Treatment

Your child’s doctor will manage adrenal insufficiency with steroids or medication that replace the hormones that their body isn’t making. It’s important to work with your child’s doctor and stick to their management plan.
[Alfie] also carries an emergency kit with him... We have one in the house, he has one in his school bag, the school has one. There’s one in the car. So wherever Alfie goes, the kit goes with him.”
Anna Rowell
ALD caregiver
[Alfie] also carries an emergency kit with him... We have one in the house, he has one in his school bag, the school has one. There’s one in the car. So wherever Alfie goes, the kit goes with him.”
Anna Rowell
ALD caregiver

What is Adrenal Crisis? 

Managing the adrenal aspects of ALD is an important part of your child’s care because adrenal insufficiency can lead to adrenal crisis if left unchecked. Adrenal crisis refers to a life-threatening condition that occurs when there is not enough cortisol, a hormone produced by the adrenal gland.

Symptoms and signs of adrenal crisis can include:

  • abdominal pain

  • confusion, loss of consciousness, or coma

  • fatigue, severe weakness

  • hypotension (very low blood pressure)

  • dehydration

  • high fever

Adrenal crisis can occur more frequently after an infection, trauma, or another stressor. It can lead to severe effects and require emergency medical treatment.

If your child has been diagnosed with adrenal insufficiency, it’s important to recognize signs of potential stress that can lead to an adrenal crisis. Your care team, including your endocrinologist, can work with you to recognize and manage adrenal symptoms.

Learn more about working with your care team
Monitoring for Cerebral ALD