ALD Significance

Affecting from 1 in 17,000 to 1 in 20,000 people, X-linked ALD is the most common inherited disorder of the white matter in the central nervous system. Due to its frequency and extensive adverse effects, ALD receives much needed attention in medical research. Websites such as the x-ald database (http://www.x-ald.nl/) provide information records about the disease itself, while support groups and foundations such as the Myelin Project (http://myelin.org) provide personal support. These groups are accepting of donations, so if you wish to contribute your help towards treating and supporting those afflicted, you will make a difference.

ALD Legislature

ALD is an issue which causes severe damage to patients and families- luckily, it has recently been receiving attention from multiple foundations and researchers searching for suitable cures. Unfortunately, these solutions generally cannot reverse the damage done before treatment and as such, recognizing the early stages of ALD can be essential. However groundbreaking new legislature in Connecticut has set forth the possibility of screening newborns for ALD, allowing the prevention of the disease.

Through a public hearing, supporters of ALD prevention spread awareness and gain progress for the legislation for newborn screening.

Source: http://www.theday.com/article/20130301/NWS01/130309989/-1/rssthesound

ALD Explained Video

Very educational video from the YouTube channel YourekaScience.

ALD Treatment

With the onset of Adrenoleukodystrophy, the body becomes damaged by long fatty acid chains which are unable to be broken down by the body- causing damage to the brain and adrenal glands.

One possible treatment is Lorenzo's Oil. It was developed by a family with a member suffering from ALD, so they created an oil which helps prevent or slow down the workings of the disease. This is accomplished by normalizing the fatty acid chains in the brain, stopping the progression of the disease but not reversing the neurological damage cause.

The alternative treatment to Lorenzo's Oil is a stem cell treatment through bone marrow transplant. By giving the patient stem cells capable of producing functional protein, the brain damage can halted and even fixed. While this treatment has not been scientifically proven and causes greater risk of infection, it has been successful in previous patients with lesser degrees of severity.

ALD Basics

ALD is a genetic disorder arising from the body's inability to break down saturated fatty acids. These fatty acids, combined with an abnormality in myelin cause symptoms such as:

• Seizures
• Behavior Change
• Poor memory
• Developmental Regression
• Fatigue
• Death

In the most common form of ALD, changes will become prevalent shortly after being diagnosed, usually culminating in death after about 2 years. See the story of one family struggling with the hardships of ALD here:

http://youtu.be/p5u4NR5aY9s