What is Adrenoleukodystrophy Support?

AdrenoleukodystrophySupport.org is a dedicated patient-to-patient support community for families affected by Adrenoleukodystrophy.

Adrenoleukodystrophy Support is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with ALD.

What is Adrenoleukodystrophy?

Adrenoleukodystrophy (uh-dree-noh-loo-koh-DIS-truh-fee) is a rare, genetic disorder that leads to brain damage and failure of the adrenal glands. It affects the body’s nervous system, causing the weakening and failure of the nerve impulse; thus leading to disability.

Adrenoleukodystrophy (ALD) is a type of hereditary (genetic) condition that damages the membrane (myelin sheath) that insulates nerve cells in your brain.

In adrenoleukodystrophy (ALD), your body can’t break down very long-chain fatty acids (VLCFAs), causing saturated VLCFAs to build up in your brain, nervous system and adrenal gland.

The most common type of ALD is X-linked ALD, which is caused by a genetic defect on the X chromosome. X-linked ALD affects males more severely than females, who carry the disease.

Forms of X-linked ALD include:

  • Childhood-onset ALD. This form of X-linked ALD usually occurs between ages 4 and 10. The white matter of the brain is progressively damaged (leukodystrophy), and symptoms worsen over time. If not diagnosed early, childhood-onset ALD may lead to death within five to 10 years.
  • Addison’s disease. Hormone-producing glands (adrenal glands) often fail to produce enough steroids (adrenal insufficiency) in people who have ALD, causing a form of X-linked ALD known as Addison’s disease.
  • Adrenomyeloneuropathy. This adult-onset form of X-linked ALD is a less severe and slowly progressive form that causes symptoms such as a stiff gait and bladder and bowel dysfunction. Women who are carriers for ALD may develop a mild form of adrenomyeloneuropathy.

Who can join Adrenoleukodystrophy Patient Support?

If your family has been affected by Adrenoleukodystrophy, consider Adrenoleukodystrophy Support as your second home. Adrenoleukodystrophy Support, as well as the rest of BensFriends.org’s patient communities, is free for members to join.

What is BensFriends.org?

In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.

BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.

You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our videos at http://www.youtube.com/BensFriendsVideos.