Michael,

Thanks for sharing your story. I've heard of leukodystrophy, but I'm not familiar with the specifics. Did your brother get it as a child? Does it present differently in adulthood? What kind of treatment do they have for it? Is it similar to the disease that was presented in "Lorenzo's Oil"?

purple pal

Purple pal, boy I missed your questions but am happy to answer those I remember. Leukos are a family of diseases, all inherited, ranging from the Lorenzo Oil type (which is the most common leuko) to a vascular type. They all damage myelin. Mainly they are children's diseases, which carry short life spans. In general the adult forms are fatal too, but slower in development. In my case, it doesn't make any difference, I got it at age 59. I have two brothers and one sister that have it.
Those who get leukos have about a 30 percent chance of being diagnosed, those who are undiagnosed form the 2nd largest pool of people with myelin damages. The first, of course, are those with MS.
NIH started a research study in 1997 to catalog and find the causes of those with undiagnosed leukos. The wanted to study 400 people. I just applied... and, yes, they still are accepting people 10 yrs later.
One of the interesting leukos is Alexander Disease. Over the past 50 yrs 30 adults have been diagnosed world wide. A veterinarian at the University of Wisconsin is the nation's leading authority on Alexanders. He was able to develop the disease in mice, so that it could be studied. The gene that causes Alexander Disease plays an important role in nerve repair, so the Vet, Albee Messing, has been given a large NIH grant. If he masters Alexanders Disease, medicine is a step closer to solving how to repair damaged nerves.
This has been a fantastically interesting disease for me to be stuck in the middle of. My father was a Mayo Clinic neurologist who made some of the early important discoveries with MS. He was disabled with rheumatoid arthritis very early in his career, but was one of the first patients involved in the discovery of cortisone. He also consulted on Lou Gehrig when Lou fist came to MAyos and my father was first to suggest he had AlS, so I feel that I have neuro links in many places.
My son is disabled with bipolar, and I have been very active in those circles. My wife is also disabled, so we are the disabled family. I thank my father for being such a good role model for me, he has been my inspiration throughout. and, no, there are no treatments. Sorry for the long post.