On Twitter you can follow the AC4ALD there as well, here is a link to a feed of x-ald related tweets! #xald

If you utilize Twitter feel free to follow me, I am always looking to bring awareness to Adrenoleukodystrophy as well as many other things. http://twitter.com/otoole4info

Adrenoleukodystrophy (ALD, X-ALD) is the most frequent inherited disorder of the central nervous system white matter with a minimum incidence of 1 in 17,000 newborns, according to the x-ald database.

The onset of the adolescent form of ALD generally occurs between the ages of 4 and 10 years of age. ALD affects the brain by demyelinating the myelin sheath.

If left untreated this disorder will most likely result in death well before a child reaches adulthood.

In the case of Adrenoleukodystrophy and all Leukodystrophies, there is no cure! Once the ALD becomes apparent in the adolescent form the only way that I am aware of  stopping it is to have the child go through a Hematopoietic Stem Cell Transplant (HSCT). HSCT, commonly referred to as a Bone Marrow Transplant (BMT).

This disorder is only treatable at this time. Early diagnoses of Adrenoleukodystrophy so they may be monitored properly. A adolescent male that is diagnosed early in life, infancy, will stand a much better chance to living a normal life so to speak. If diagnosed in a males infancy there is a chance they may go through life never developing any form of ALD such as the adolescent form or the adult form known as Adrenomyeloneuropathy (AMN). There is a chance ALD will present itself in childhood. There is a chance that if the childhood form did not develop then perhaps the adult form will develop.

From what I have gathered during my short time dealing with ALD. You have three potential probabilities. A person could have ALD and it never presents through life, ALD could rear itself in childhood or ALD could rear itself in adulthood in the form known as AMN. With the probability of three outcomes with no cure available, wouldn't it behoove you to know in advance if your child has Adrenoleukodystrophy so you know where to turn if the monster rears its undoubtedly relentless wrath upon your loved one!

More about why this site exists in the first place.

A little about me the writer. I am a husband and a father of 4 children, three boys and one girl. Two of the boys the oldest and youngest have x-linked Adrenoleukodystrophy.

I am not a medical professional, I am only a father on a mission to educate as many as I can in regards to this horrific disorder known as ALD.

My oldest son, who at the time of this writing was 8 year of age, had gone through a Bone Marrow Transplant to hopefully halt ALD's progression. Our story is rather lengthy in words so I won't get into it here. I will say this those in the medical arena need to become more aware of this disorder and the link of Addison's Disease in adolescent boys and ALD. No family should have to use a web application such as Google to learn of or tip them off to their child's disease or disorder! 

Our son began to display symptons and signs that perhaps could have been stopped in advance had we known at infancy. He in a likelyhood would have had to endure the BMT even if we knew, but he most likely would have been back to normal once it was all complete.

With much work ahead in the way of continued follow up appointments, Occupational Therapy, Physical Therapy and more perhaps he'll regain some of what he lost.

My goal is to provide you a whole lot of places you can turn to for support and pray that at least those in the medical arena at least take the time to become cognizant of the disorder more than they ever had before this time!

With that being said feel free to browse the links I bring to you even if your not a family dealing or one that has dealt with ALD. The more in the world that are aware of Adrenoleukodystrophy will perhaps put us one step closer to hopefully finding a cure for this and other Leukodystrophies!

I hope you find the links provided of use.