How Do You Get ALD?

ALD is passed on by an X linked recessive gene.  Since more men become symptomatic than women, it often goes unrecognized when passed from mother to daughter, and only becomes evident when passed to sons.  It is possible for a father to pass this on to his daughter, but not to a son.   A father can not pass the gene to his son because he only contributes the Y.  Although women are typically considered a "carrier", some do become symptomatic.  

 I met a woman who had recently started using a cane from being an ALD carrier.  Her sister had been crippled for years and was originally misdiagnosed with Multiple Sclerosis (MS).  When men or women do not become symptomatic until they are adults, the disease is called Adrenomyeloneuropathy, (AMN).  ALD and AMN have been misdiagnosed as many other diseased including ADHD, Autism, MS, Polio, and in Wyatt's case, Epilepsy.  The incidence in the general population is currently estimated to be 1 in 17,000.

Western Medicine's primary treatment has been bone marrow transplants.  This process, which kills one third of the boys receiving it, requires the complete suppression of the immune system with chemo and radiation to insure successful "grafting" of the donor's bone marrow.  Much of the information about it's success is conflicting and evasive.  While a study of 12 boys pops up in much of the research, I've been unable to ascertain if any of them are now alive.  My own research of the statistics has led me to believe that over 75% do not survive long term in spite of this procedure, and if they do, many end up in a vegetative state.

The disease may progress rapidly.  The symptoms are vision loss, hearing loss, deteriorating cognitive function and deteriorating motor function.  The boys often stay in a vegetative state for a year or two before dying.  Unfortunately, most boys are not diagnosed until they've begun to deteriorate because the early symptoms go undiagnosed.

Wyatt's Progress