3 ALD Stats and Facts

ALD is very rare, which explains why it's one of the lesser known genetic disorders in the world. How rare is ALD though? How many people die from ALD each year? What are the odds of.....? I decided to provide some statistics.

• 1 per 20,000 people suffer from X-linked adrenoleukodystrophy (right diagnosis)
• The incidence of X-ALD has been estimated to be 1:17.000 newborns. (x-ald database)
• Stem cell transplants on children with ALD show mortality rates as high as 40%

A you can see, ALD is rare but dangerous. It can lead to many problems and becomes very severe over time.

Why Blog About ALD?

This blog was created to give people a way to access rare information on a rare genetic disorder. The more people that know about this disorder, the more people can work to find different ways to help the families suffering from X-ALD. More attention needs to be brought to this disorder seeing as it has devastating effects on the poor souls who acquire it. Another reason for creating this blog is so other people have a good idea on what ALD is when they come in contact with the effects of ALD in the reakl world. Many people may see people suffering from ALD and think of them as having another disorder. Or maybe other people have siblings or family members diagnosed with ALD and they want to know more about it. That is why I have gathered information and provided other resources and articles for viewers to loom at. ALD may be a rare genetic disorder, but that doesn't mean that it should stay unknown. ALD is real, very real. And it is out there. So educate yourself, take the initiative to learn about this disorder.

How to diagnose ALD

If you're looking for a diagnosis on whether you or someone you know has ALD go to a doctor or specialist. The professional will ask about medical history and if you've been showing any symptoms. You will be thoroughly examined. This examination may or may not include the testing of your blood or genetics. In addition to this you may be required to have your brain scanned. In these scans the doctor will be looking for saturated fat build up in the brain and the deterioration of the myelin sheath. Only a doctor or specialist can accurately diagnose someone with ALD.

Symptoms of ALD

Most people wonder what the disorder looks like. What are the symptoms? Well I've decided to provide a basic list.

• Behavioral Changes
• Poor Memory
• A slowing down of thought process
• A slowing down of physical activity
• Developmental regression
• Seizures
• Hearing loss
• Difficulty swallowing
• Difficulty speaking
• Difficulty with coordination
• Vomiting
• Fatigue
• Increased pigmentation of the skin
• Dementia
• Vegetative state
• Death

ALD Blog

This blog is dedicated to sharing the knowledge I have acquired through research about Adrenoleukodystrophy. In case you don't know what Adrenoleukodystrophy or ALD is, it's the inability to properly break down fatty acids due to an inherited defective gene. Fatty acids build up in the brain and adrenal cortex causing damage to the myelin sheath in the brain and adrenal gland.The most common type of ALD is X-ALD which is an X-linked disorder meaning the disorder is carried through the X chromosome, found in both men and women. This disorder can be expressed through mostly men and rarely women because of the presence of a normal X chromosome. Men have an X and Y chromosome meaning if the X carries the genetic disorder it will be expressed. Women carry two X chromosomes and ALD is recessive meaning the presence of a normal X chromosome will not allow ALD to be expressed. A woman can express the ALD traits only if both X chromosomes are linked to the ALD trait.