Fight ALD
A d r e n o l e u k o d y s t r o p h y
Adrenomyeloneuropathy is the adult onset of ALD and can affect both men and women. It affects approximately 50% of patients with the ALD gene defect, and according to NORD (the National Association of Rare Diseases), even in the absence of therapy, it is more common than the severe childhood form of the illness. It was originally believed to only affect males and that females with the gene were simply carriers, but within the last few years has been realized to be as prevalent among women as it is men. Women have a 50% chance of passing their bad X to their children. Men will always pass their bad X to their daughters.
Symptoms often begin later in life for women, but statistics have shown that 50% of women will have symptoms by the age of 45 and chances increase by 10% each additional decade of their lives. Men on the other hand can have symptoms as early as their late teens or early twenty’s. It is now believed that anyone who has the ALD gene will be affected at some point in their lives.
As with ALD boys, a large percentage of men have adrenal insufficiency and recent statistics show that 20-50% of women will too. I have met many AMN women who have thyroid problems and although the correlation of this hasn’t been studied or acknowledged by medical professionals, I suspect it may be a component of the disease.
In AMN neurological disability is slowly progressive over several decades and involves the deterioration of the myelin sheath of the spinal column. According to the Australian
Leukodystrophy Support Group, Inc. web-site, while mental function may be entirely preserved, approximately half of AMN patients do develop cerebral changes at some time during the course of the illness and then may show rapid neurological progression. Major manifestations are adrenal impairment, varying degrees of difficulty with walking due to spasticity, urinary disturbances and impotence and sometimes cognitive defects, emotional disturbances and depression.
AMN is most commonly misdiagnosed as Multiple Sclerosis, degenerative disc disease and debilitating arthritis when there has been no known family history of ALD. Once a correct diagnosis is made it often will be traced to numerous other family members over many generations.
There is no known cure for AMN and there is little to no experience in transplanting bone marrow of AMN patients so it is unknown whether there would be any benefit or not. Kennedy Krieger Institutes clinical trial of Lorenzo’s oil and it’s benefits for adults has been put on hold at this time. Most patients try to treat their symptoms through either traditional medicine or with homeopathic supplements, mustard oil, acupuncture and exercise.
