Diagnosis

All currently accepted diagnostic techniques for ALD have proven their effectiveness. Unfortunately, these accurate tests are often not even considered until late in the course of the disease. The Foundation’s mission in this area, therefore, is the prevention of misdiagnosis.

Initially, ALD-afflicted boys are typically misdiagnosed with attention deficit disorder (ADD) or attention deficit hyperactivity disorder (ADHD), behavior problems, socialization issues, and related conditions.  They are often prescribed drugs, such as Ritalin, that are intended to alter their behavior.  They may also be referred to various therapists. Years may pass as their disease worsens.

For many medical conditions, a delay in reaching the accurate diagnosis is unfortunate, but not necessarily a matter of life and death. This is not the case with ALD. Late diagnosis of this disease is often akin to a death sentence. Many young boys, instead of playing Little League, scoring soccer goals, and camping out with friends, are in graves. If the disease is diagnosed early enough, these boys may have a chance to survive.

As with the Stop ALD Foundation's Prevention Mission, the key here is awareness and education. Parents, teachers, principals, psychologists, psychiatrists, pediatricians, therapists, and others should be aware of ALD as a possibility when young boys have learning, concentration, and social problems—particularly when these issues do not respond to initial therapy.

To attain the goal of speedy and accurate diagnosis, The Stop ALD Foundation is committed to raising the awareness and knowledge of the above people. Before a child is referred to a therapeutic school, and labeled with disorders such as ADD, ADHD, autism, and Asperger’s Syndrome, a simple, non-invasive brain MRI should be performed. Any boy or man who is diagnosed with adrenal insufficiency should also be tested for ALD.